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Patient Engagement Tip of the Month

Geri Lynn Baumblatt, MAGeri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

Posted: Monday, December 03, 2018

Do we have a heard mentality?


By Geri Lynn Baumblatt & Chris Heddon


With all the efforts to communicate better with patients— do you ever wonder if they can hear you? Not metaphorically, but literally.


Hearing is a baseline essential for engaging in care and navigating the healthcare system, but how often do we take it for granted that patients can hear what we say?


Only about 15% of people who need hearing aids have them. We also tend to assume hearing is only an issue for seniors. But over 60% of people with hearing loss are under age 65. And while cost is an issue, so is diagnosis and awareness of the other problems it contributes to.


Right now, many people nod along and didn’t quite hear what you said about their medication or follow-up care. They’re embarrassed. Or they think they understood enough and want to move the conversation along, especially if they know you’re pressed for time.




Picking Up on Signs of Hearing Loss

The exam room is usually quiet, so in that setting it may be hard to pick up on hearing loss that isn’t profound. Some clues:

  • Are they having issues with balance and falls? People with a mild (25-decibel) hearing loss are 3 times more likely to have a history of falling. And every10-decibel loss increased the chances of falling by 1.4 fold. So addressing hearing can be a 2-for and map help prevent falls. (Lin, et al, 2012)
  • Do they have trouble hearing you when you’re facing away from them? Even if they can’t lip read, people often supplement auditory information with visual clues.
  • Do they ask fewer questions? They may stop asking if they won't be able to make out the answer.
  • Do they seem less social or more withdrawn? People often stop going to social gatherings and restaurants when they can’t hear well enough to follow or join conversations.

It’s no wonder hearing loss is associated with social isolation in older adults, which also contributes to health problems. Untreated hearing loss is also associated with cognitive decline and diseases of isolation, so higher rates of depression, anxiety, and other psychosocial disorders.


With the health risks piling up, why isn’t screening more common?


One issue is recognition. Too many seniors and families may see it as “just part of aging.” But there’s also social stigma. People are both embarrassed they may have a disability, and they’re often in denial as a result. It often takes 7 to 10 years from the time that someone first realizes that they have hearing loss to the time that they first get a hearing aid.


Helping people adapt to hearing aids


Once people get diagnosed and fitted for hearing aids, there are still challenges. Even though hearing aids are now smaller and less noticeable, people still need to adapt to them. It’s important to encourage people to wear them every day for a month. This helps people get used to a new and more “digital” hearing experience. And it gives their brain a chance to remodel around this new information input. Unfortunately, many hearing aids end up in a dresser drawer or returned because people don’t give their brain a chance to acclimate. So follow-up to find out if they’re being used.


Only when people can hear well can they be part of the conversation.


For more, also check out this brief interview about best practices when talking to someone with hearing loss.



Chris Heddon, DO is a physician-entrepreneur. He began his career as an anesthesiologist. After years of progressive hearing loss, he left medicine to found Resonance Medical, which developed a clinically validated, artificially intelligent, mobile-based hearing test that was sold to a hearing aid manufacturer in November 2018. @hearresonance

Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

Tags: patient engagement, communication, doctor's appointment, experience, listening
Posted: Thursday, November 01, 2018

From Kiribati to the Bedside: Making Family Caregivers Partners in Healing®


By Geri Lynn Baumblatt & Michelle Van De Graaff, RN, BSN
While we all look forward to the day when a family member is told they can go home from the hospital, taking someone home and feeling you can take care of them well is daunting.
And it’s often on that last day that family caregivers are told what they need to do and shown how to do it. So, while people are anxious, their minds crowded with questions and concerns, and working memory is less than ideal, we try and tell them what to do.
Michelle Van De Graaff’s experiences led her to pilot a way to involve families in care at the hospital. When in the Peace Corps in the Republic of Kiribati, she noticed that family members provided much of the care for their loved ones while in the hospital. After returning from the Peace Corps, when caring for her own child with a congenital heart problem, she noticed how calmly the baby tolerated treatments when she or her husband held the child. As parents, they actually provided a sort of palliative care the clinicians couldn’t.

Michelle in the Republic of Kiribati

Inviting Family Members to Learn and Help at the Bedside
Many family members want to help, but often feel intimidated by doing hands on care. Michelle began a program called “Partners in Healing” to invite family members to become part of the care team. Most accept, then get training on things like monitoring fluids, understanding why and how often to use an incentive spirometer, or in the ICU they may help apply lotion. They get a badge and a checklist where they can help record what they do (like helping with passive motion exercises). They’re also shown where things like ice and pillows are, so they can help themselves.
Families feel involved and included, and less like furniture. They get a chance to learn and practice care, build competency, and they become comfortable and confident in their ability to continue care at home. As families and patients explain:
“We (wife and I) thank you for allowing us the dignity to be part of each other’s lives.”
“I really appreciated being given the authority to assist in my husband’s recovery.”
"This program helped me [the caretaker] feel the confidence that I would be able to do what is needed once we arrive home.”
This process also gives family caregivers a chance to ask questions they may not know they have until they start caring for a loved one. When home is the first place family caregivers do hands on care, they often have a lot of questions and no one at hand to guide them.

In a study of the Partners in Healing® pilot working with families of cardiothoracic surgery patients, there was a 65% reduction in 30 day readmissions. And 92% of families said it “greatly enhanced” their transition home. A patient experience study from 2012-2016 on 7 acute care units showed significant improvements:

  • They felt their preferences were taken into account by the staff:(+9.1)
  • They understood how to manage health (+7.9)
  • They felt nurses explained things understandably (+8.6)
Family members often experience time in the hospital as endless waiting and anxious watching. They are present, but often don’t know how to help or when to chase down a nurse. Utilizing this time in the hospital to train family caregivers, changes those interactions. And it gives them agency both at the hospital and as they bring their family member home.
Hear from a Nurse and a couple that experienced Partners in Healing (3 minutes)
Read the article in Chest
Van De Graaff M, Beesley SJ, Butler J, et al. Partners in Healing. CHEST. 2018;153(2):572-574. doi:10.1016/j.chest.2017.09.046. https://journal.chestnet.org/article/S0012-3692(17)32890-8/fulltext

Michelle Van De Graaff RN, received her BSN from Brigham Young University.  She has worked with cardiac patients for 31 years and is the Practice Chair on the Acute Cardiovascular Unit at Intermountain Medical Center.  She sits on the hospital, regional and corporate Nurse Practice Councils for Intermountain Healthcare and in the Peace Corps in the Republic of Kiribati. @IntermtnMedCtr  michelle.vandegraaff@gmail.com

Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

Catch up with Geri Lynn November 9-10 at the National Caregiving Conference in Chicago. She’s cohosting 2 panels and a participatory lab at the Family Caregiving & the Workplace Summit.

Nurse family caregivers, CNOs and CXOs will discuss the impact on nurses and the organizations that employ them. If you’re a nurse, nurse manager, director, CNO or work in hospital leadership, you can participate in the surveys here.

Tags: communication, family caregiver, engagement, experience
Posted: Monday, October 01, 2018

Getting Engagement Right: Start with the Patient Perspective


by Gregory Makoul & Geri Lynn Baumblatt

In one tweet, Erin Moore expressed how many people view standard patient engagement efforts. Too often, they’re well-intentioned ways to tell patients what they need to do from the perspective of a care pathway. But what about the patient’s perspective?

It can be challenging for care teams to get a good sense of what patients are going through in their lives. People have brief encounters with healthcare providers, but deal with health more than 5,000 waking hours per year. How do clinical teams know what patients are going through, what matters to them as people, what they need and want to do, and what gets in their way? And how can they help?

The simple answer is to ask and listen. Indeed, patient-centered care sounds simple: respect patients as people; pay attention to their perspectives. But clinicians are running harder than ever, making it difficult to accomplish this in everyday practice. In other words, even simple things are hard. Solutions have to be easy.
There are a variety of promising solutions, ranging from teaching and assessment geared toward improving provider communication skills to programs that help patients clarify values and preferences to digital tools that capture patient ‘stories’ about themselves, their health, and their care and deliver useful summaries to the care team. The line of continuity that runs through successful solutions is sensitivity to the fact that both patients and providers are busy and often overwhelmed.
Of course, providers can ask about goals, barriers, and other patient perspectives in the course of talking with patients or caregivers. But time is certainly a constraint. Moreover, we have seen that patients share information via digital tools that has not been raised in previous interactions, which could be a function of overcoming embarrassment, more organized thinking when prompted to contemplate what they want to share, or the fact that they have never been asked. So how could a digital tool help?
Imagine a provider who is frustrated because a patient’s blood sugar is “out of range”, despite reviewing the treatment plan at each visit over the past couple of years. Before the patient comes in the next time, she is prompted to use a digital tool to share how her health affects everyday life, her priorities and goals, and barriers to achieving them. Once this information is captured, it can be pulled into the medical record and the doctor can review a summary before walking into the exam room.
And the conversation shifts: “Oh, now I understand – your husband does the cooking and he cooks with a lot of sugar and sweeteners.  Let’s try a different approach.”
Or in another scenario: “I didn’t realize that you’re also caring for an ill parent. How is that impacting your ability to take care of yourself?”

The first step to real patient engagement is acknowledging that patient perspectives are integral to excellent care. Getting the information digitally can improve communication by getting thoughtful, candid responses and reliably positioning what matters to patients front and center in clinical encounters.  But digital should augment, not replace, the personal. Capturing patient perspectives and integrating them into the workflow sets the stage for improving the experience and delivery of care – for both patients and providers.

Gregory Makoul, PhD MS is internationally recognized for expertise in physician-patient communication and shared decision making as well as a radical common sense, person-centered approach to health care innovation. He is Founder and CEO of PatientWisdom, Executive-in-Residence at AVIA, and Professor of Medicine at the UConn School of Medicine. Greg devoted six years to care transformation as Senior Vice President and Chief Innovation Officer / Chief Academic Officer at Saint Francis Care in Hartford CT, gaining real-world experience that complemented 15 years on the faculty at Northwestern University Feinberg School of Medicine. In 2018, he received the George Engel Award from the Academy on Communication in Healthcare for outstanding research contributing to the theory, practice, and teaching of effective healthcare communication and related skills.  @g_makoul @PatientWisdom

Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn


Tags: patient engagement, communication, technology, engagement, listening, patient
Posted: Tuesday, September 04, 2018

Reframe Your Story: Images that Connect


By Geri Baumblatt, Dr. Michael Bennick & Steven Koppel
It’s often challenging for people to express the often complex and confusing experiences of illness, surgery, recovery, or caregiving. And not all of us have a place we can turn to like a piano or canvas to express ourselves. Even asking people to draw a simple image can be daunting.

Consider “Caroline.” She has bipolar disorder and struggles to help her son and family understand how she feels during a manic cycle. She was part of an clinician-moderated outpatient group at McLean Hospital that was sharing personal experiences with other patients.
In these groups, people usually go around the room and talk about their experiences or how something feels. Unfortunately, people who have been in many groups often say “I’m tired of participating in the same groups over and over again. I’ve heard it all before.”
Changing the Conversation
One way to change the conversation and make it more engaging is to have people create and share expressive images. People can start with a stock photo or take their own photo.
Caroline noticed these crumpled phone cords in the corner of a room at the hospital. She took a picture because they felt like a good representation of her experience during a manic cycle, which she thinks of as “neurons crashing around in her mind.”

Next, she used an app that made it easy to transform that photo into an expression of an experience, thought, or feeling. As you can see below, she transformed the photo from everyday wires on a floor to an expressive image of her experience of mania.

Caroline shared the image with the group and her family. It helped her show and express how she felt. And it allowed her to describe and speak to the image in a very personal, novel, and meaningful way.
This image also gave the group insight and created a new dynamic and dialogue. They could relate to it and connect with her. People start by focusing on the image, and the conversation and interaction that follows is: support, validation, and connection. As a clinician using this approach with patients explained:

“It’s instrumental in helping deliver more effective treatment.
When patients can describe what they experience, treatment becomes much better.”
It’s as though creating the image is a window into what they’re experiencing. And it helps them to describe and articulate what previously seemed indescribable.
These images can be printed, turned into slideshows, or used to create a digital recovery plan the patient can take home. The app, called MyMoments, is licensed to healthcare organizations along with training and support from a nonprofit organization called the EDI Institute. It’s then available to patients, clinicians, and others for ongoing use.
Expression for the Caregivers
The value of this extends beyond patients to help forge caregiver connections and  wellness. For example, at Smilow Cancer Hospital at Yale New Haven, a leadership group of nurses, physicians, administrators gathered. They were given the opportunity to use images to help express “I do what I do because....”  In this case, they all used this same image as a common starting point:

One participant who considered himself “uncreative and non-artistic” created the new image below. He described how the worlds of the patients they care for are turned upside down by cancer, and that’s what defines their roles as caregivers: to BE THERE for patients.”

Others in this small group of colleagues saw and created entirely different storylines from the same image. One spoke of gratitude, another of self care -- but all reconnected with purpose and in the process of self rediscovery recognized all that they shared in common. This proved to be a deep and meaningful discussion that brought all the members of the team closer than they were when they entered the room.
To get a better sense for the thought process and impact of expressing through images, view this brief slideshow:

This is one way an easy-to-use resource helps people express their stories, fears, and perspectives on where they are so they can communicate and share it with their clinicians, peers, and families.
How else do you help your patients and caregivers get out of the standard ruts to express themselves so they can engage in new and meaningful conversations?


Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

Steven Koppel spent 20 years as a Senior Partner and business consultant with Accenture. In 2002, he left to volunteer with non-profit organizations to maximize their social impact. Inspired when his interest in photography as an artistic medium helped him cope with family medical challenges, he founded the EDI Institute as a nonprofit in 2013. It’s dedicated to pioneering a new form of therapeutic expression called Expressive Digital Imagery®. steven.koppel@ediinstitute.org

Dr. Michael Bennick
is the Medical Director of the Patient Experience and Chairman of the Patient Experience Council for Yale-New Haven Health System. He is an Associate Clinical Professor, Department of Medicine at Yale University School of Medicine and a Fellow of Trumbull College at Yale University. He began his professional life as a sociologist interested in how individuals find meaning within the communities they reside. This led him on a journey which brought him to internal medicine. The patient has been the focus of his attention for more than 3 decades. 

Tags: patient engagement, communication, technology, engagement, experience
Posted: Monday, August 06, 2018

Making it Click

I spend a lot of time in hospitals, but it’s not where I was planning to spend Memorial Day. An older relative hit her head ad broke a couple of ribs – and so there we were.
I sat in the room as a nurse explained how and when to use the incentive spirometer to prevent pneumonia. Then something simple, yet amazing happened. He took an extra minute to explain that the pain of the broken ribs would prevent her from taking full breaths. And how using the spirometer to take deep breaths in would expand more of her lungs. That way, those small air sacs in her lungs wouldn’t collapse, fill with fluid, and get infected.
It was like hearing the last puzzle piece snap into place.
She got it, she understood the importance of the deep breaths, how her participation is what would make the difference -- and she was on it. She even started to explain it to the doctor when he came by.

We often THINK we’re connecting the dots for people. But are we giving them what they need?
Is it enough to tell people an incentive spirometer will prevent pneumonia? Probably not. I don’t think it’s about giving a full A&P lecture – but enough information to give people that insight into why and how – so their brain gets it.
I’ve been working with patients and family caregivers to ensure they understand what they can do before and after surgeries (like joint replacement) to recover well:
  • Get up and walk
  • Stop using nicotine in the weeks before and after surgery
  • Avoid opioids

Obviously, people want to have a smooth recovery. And I kept explaining one of the reasons these things help with healing are because they improve blood flow. But most people were still a bit stymied. They think of their bones as needing calcium, but not blood. It seems like a different system. It just wasn’t clicking. So starting with a little more on how the bones need blood put that extra piece in place so it made sense.
People were surprised and confused by the recommendation to get a dental checkup before joint replacement surgery. Telling people that gum disease or things in their mouth could lead to an infection in a hip or knee joint didn’t resonate. But explaining that any bacteria in their mouth could travel through their blood to their new joint helped it come together.
Are there best practices or instructions people rarely follow?  
If so, take a step back and ask why it isn’t clicking for them. What’s missing in the explanation to them that we often take for granted? We forget what it’s like not to know the why or how of so many things we ask people to do.
Share your insights where you’ve seen it click for patients and families.


Geri Lynn Baumblatt MA,
For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

Tags: patient engagement, communication, patient education, expectations, experience, healthcare
Posted: Wednesday, July 11, 2018

Making the Journey Part of Engagement



Non-Emergency Medical Transportation: A new opportunity for patient engagement

A core challenge health systems and services providers face in patient engagement is attention. Thinking about one’s health care proactively requires thinking about one’s mortality, and who wants to do that?
Consequently, most patient engagement and patient experience centers around the few moments when people are required to think about their health: medical appointments, hospitalizations, discharges, and pharmacy visits.
Lately, a new touchpoint in the care journey is emerging as an important opportunity to build patient experience and drive greater patient engagement: non-emergency medical transport (NEMT). NEMT is any transportation service for people who aren’t in an emergency situation, but who need more assistance than a taxi service provides. It is a fast-growing segment in the healthcare workflow, where stakeholders can capture the attention of the patient or family member while they are already thinking about their care.

The recent entrance of Lyft and Uber into healthcare, Ford Motors’ GoRide, as well as several venture backed startups such as Circulation Health and RoundTrip provide solutions for the over 3.6M Americans who miss at least one medical appointment each year. The annual cost of missed appointments in the U.S. is $150B (including lost revenues and idle labor). And the Centers for Medicare and Medicaid Services (CMS) will begin to reimburse NEMT for medicare advantage beneficiaries. This new touchpoint in the healthcare experience is here to stay.
There are 3 NEMT opportunities for engagement:
1. Scheduling
If stakeholders are able to solve transportation for the patient during appointment scheduling and reminders, the focus of outreach can shift to preparation. Scheduling can transform a neutral process to a positive one, with patients able to focus more on their care. Hospitals could take information from the medical record and send SMS or email reminders along with tailored questions for patients to consider as they get ready for their upcoming appointment. 
2. The Departing Trip
The ride itself is a valuable, defined window of opportunity to provide patients with information about their condition, community resource information via their own app, or utilize the NEMT provider app. During the trip, patients and family members could interact with chatbots, or take a call with a healthcare professional to provide basic information to make the appointment more productive, or enable hospital labor to be more effective during the appointment. For example, Circulation is currently rolling out pilots to prove the effectiveness of healthcare engagement during transportation. Patients are a captive audience during these trips, presenting stakeholders with the opportunity to engage them with important healthcare information such as pre- and post-visit data, or content to promote vaccine awareness.
3. The Return Trip
The NEMT ride back from an appointment may present an even greater patient engagement opportunity than the ride there.  During this time, patients are in a mindset to reflect, and could digitally record or answer any questions people have. They could review their care plan and go over next steps. After all, how many times have you thought of a really important question after you have left the doctor?
NEMT is not free of challenges when it comes to engagement. It requires coordinating multiple stakeholders, whether it’s the health system, the NEMT provider, or even the driver, to make the experience work. When it comes to drivers, NEMT requires training a new labor force of transportation drivers that are prepared to provide not just a ride-sharing experience, but a healthcare experience.
Creating an effective NEMT patient engagement experience requires both a time and capital investment with results that must be quantified. However, NEMT presents a rare opportunity to create new experiences, and gain valuable information and access from patients while they are in transit.



Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

Dhruv Vasishtha is a healthcare technologist with experience in early stage mobile, wearable, and AI technology. His experience includes strategy and product management at healthcare companies including Medidata and ZS Associates, as well as founding two health IT startups. He received his MBA from The Wharton School in Health Care Management, and his BA from Columbia University.  He currently invests in and advises healthcare technology startups and is organizing the inaugural Innovation in Caregiving conference. @dvasishtha

Tags: patient engagement, communication, doctor's appointment, experience, healthcare, patient
Posted: Tuesday, June 05, 2018

Find Out What I Know About Me: Improving Diagnosis through Patient Partnerships


David Andrews

David’s Story

22 years ago I experienced a surprising weakness in my legs. At first, I thought it was a back problem, but it turned out to be neurological. The neurologist said he would have to do some research to figure out exactly what it was. But beyond my immediate symptoms and my parent’s medical history, he didn’t really ask me many questions.


I tried to figure out my own diagnosis based on my symptoms, history, and family history. Many of the possibilities were genetic, so family history was important. Association sites for specific diseases are usually helpful, but I didn’t know what I had. So I sought out medical websites intended for physicians. While it’s written for physicians, I could understand enough to make good use of the articles.


One possibility was something called: Lytico-Bodig. It’s only found only on Guam. But I had spent a year and a half on Guam in my youth, where my father was the acting head of a new teacher’s college. However, Lytico-Bodig was confined to one village and was only acquired from the food they ate which was found to contain a neurotoxin. So even though I had been to that village many times, I had never eaten their food. I told my neurologist about Guam. But he just said he’d have to research, we’d have to rule it out, it and didn’t ask me more about it.


Based on my family history and the timing and circumstances of my first symptoms, I thought I probably had something called: CIDP (a rare autoimmune peripheral neuropathy). There were 3 categories of treatments. And based on effectiveness research and side effects data, I had some thoughts on which treatment I’d prefer.


At our next meeting I told the neurologist my thoughts on CIDP.  He said, “No, no, there are hundreds of things that can cause your symptoms and we have to eliminate all of them.”  For the next several months that’s exactly what he did -- including testing for many conditions a second time.


I was referred to another neurologist with more expertise in my type of problem for a second opinion. He explained that some of the diagnostic tests can vary considerably depending on who does them. So he also repeated many of the tests, which took 2 more months. He added one (a biopsy of a nerve in the foot). And that biopsy confirmed my suspicion: that it was CIDP. So I finally began the treatment.


Unfortunately, the treatment only slows the progression of CIDP, it doesn’t reverse or treat existing symptoms. So the slow time to treat was time I couldn’t make up.


Of course, I could have been wrong -- patients often are.  But the physicians made little effort to learn what I knew about me.


How can we make patients and family members more effective contributors to the diagnostic team?

In David’s case -- there were clues that could have saved time and expense in reaching a diagnosis:

•       Family history beyond just his parents

•       Potentially relevant behaviors or trips abroad

•       The pattern of onset of symptoms

•       Major stressors in the weeks and months before onset


David tried to volunteer some of this information. And he was both motivated and able to make his way through some of the medical literature. But even as an engaged patient, he felt dismissed.  As though he should wait on the sidelines while tests were run.


Of course, there’s a continuum of patients: some want to show up and have the doctor figure out the problem and fix it. Others feel sure they know the problem and get frustrated when the doctor doesn’t seem interested in what they know. Regardless of where people are on the continuum, everyone needs to know their knowledge and participation is valuable and could contain important clues:

     What do you think might have caused this problem?

     What do you think you have?

     Did anything change in your diet, environment, or life before this started?

     Other than physical symptoms, has anything else changed?


How do you find out what your patients know about themselves that they don’t think to tell you?

Patients have critical information that can contribute to a more efficient and accurate diagnosis. The health care team’s can draw the patient and family into an active role and make sure they know and feel like part of the diagnostic team. Diagnosis can improve, be more timely, and everyone will feel a greater satisfaction that comes with a team working together.


Share your diagnostic success stories as you’ve partnered with patients to sleuth out what they have.


Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

David Andrews has been a patient advisor for over 13 years: the first 10+ with Medical College of Georgia (now Augusta University Medical Center) and the last 6+ working with many regional and national healthcare organizations.  He’s currently co-chair of The Beryl Institute Global PFAC.  He has a long, varied and colorful medical history including physicians not interested in what he knows about himself, his symptoms and history. @dandrews324

Tags: employee engagement, patient education, experience, listening, patient
Posted: Monday, May 07, 2018

Safe! Caregivers Who Feel Cared For Bring Their Best Game


•   I feel guilty taking vacation because I know we’re understaffed right now.
•   Do I feel safe walking from the parking lot to the hospital?
•   Do I feel safe at work from injuries, falls, equipment issues…?
•   Is my job secure?
•   If I report this problem, will I get blamed for it?
•   I don’t know which is harder: taking care of patients all day at work, or caring for my sick loved one every other waking hour.
These are some examples of concerns that come up on safety culture surveys at hospitals. Caregivers and staff are often on alert or surveillance mode throughout their shifts, not just for their patients’ safety, but for their own safety and well being. In some organizations, this includes going to or coming from work: crossing through dangerous intersections on their way in.
At first, it may sound trivial – but it’s not a good way to start or end your day – dodging traffic and worrying about your own safety. While we remove carpets to reduce patient falls and add checks to ensure the right intervention is being offered to the right patient, how to we ensure our caregivers and staff feel safe?
We all know patient-centricity doesn’t work without attention to person-centricity of employees who deliver an experience where people feel safe and cared for. Sometimes the lowest hanging fruit to improve patient safety is to improve the physical and psychological well being of the caregivers. Healthcare is about relationships and complex interactions, so staff can only interact well with patients and families if they feel safe and at ease. It allows them to focus on the needs of others.
Employees are the best source of ideas
One approach: regularly survey staff with validated questions to assess strengths and weaknesses of the culture at work from their perspective. This should include open-ended questions asking for suggestions. After all, staff themselves are often the best source of ideas on how to improve the local culture. For example:
A nurse suggested that every month they celebrate a useful safety report and the person who reported it.
A physician suggested someone should be available to who staff can talk to confidentially for emotional support when they feel burned out.
While some suggestions might be on the organization’s to-do list, hearing what’s important to the caregivers can help prioritize where to start. Staff who feel cared for provide better and safer care.

Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

Dr. Roni Zeiger is a social entrepreneur and CEO of The Patient Safety Group, focusing on helping health systems improve safety and quality by improving their culture. He is a practicing physician and the former Chief Health Strategist at Google. On Twitter: @rzeiger

Tags: communication, experience, healthcare, listening
Posted: Wednesday, April 04, 2018

I'm not gonna lie to you Marge...What do we not tell patients and families?


Geri Lynn Baumblatt MA

It was Valentine’s day and I was at a party. The last few weeks things were good: my dad hadn’t been in and out of the hospital or ER. He was even doing well with his physical therapy and walking laps around the main floor of the house.
Around 9pm, my cell rang.
It was my mom calling to tell me dad broke his hip. She was with him in the ER now, but I shouldn’t worry or make the drive home right away. She was surprised when I became upset. She reminded me she’d  broken her hip a couple years earlier and recovered fine.
I explained that this same event for dad was different. His age and existing health issues this made it much more likely we could lose him in the next year and a half.
She said, “I’m so glad you told me. I had no idea.”
I could tell it changed the way my mom approached the situation: she worked hard to get him moving again and try to keep him out of the hospital. She was grateful to know there might be a real limit to the time we had left with him. I still wonder:
If I hadn’t told my mom about what a hip fracture meant for his life expectancy, would anyone have explained it?
Patients and families can engage better when they know the stakes.
Because clinicians and others on the healthcare team understand the meaning of a new event or diagnosis, it’s easy to forget patients and families often don’t. What does the trajectory or progression of their condition means for them? How many people with diabetes understand it’s not just chronic, but progressive?
Other times it’s easier to say nothing.
In my family, when someone won’t say what’s going on, we often quote a line from the Simpsons. Marge catches Homer inexplicably hauling a bunch of bowling balls and asks what’s going on, he replies:
“I’m not gonna lie to you Marge…”  and walks out, saying no more.
(From "Homer vs. the Eighteenth Amendment”, Season 8 of The Simpsons).
But people can’t connect dots they don’t know are there. I remember trying to figure out what to say when focus group participants with stage 3 kidney disease told us they weren’t getting worse and didn’t need to think about treatment options like transplant, dialysis, or medical management.
This wasn’t an outlier group.
Research done with people with advanced chronic kidney disease (CKD) found that for many, their first visit with a nephrologist was the first time they were told they had CKD. Or if they had been told, they didn’t understand it as serious news at the time — so they were often shocked by their diagnosis.1
The study also found nephrologists struggle to explain this complex illness and avoid talking about the future  Another study found factors like prognostic uncertainty, wanting to instill hope, and worries about emotional backlash impacted discussions about conservative management for older CKD patients.2
On the patient side, people want information so they can make plans and make informed treatment decisions. Related studies found many older CKD patients are never given a prognosis. Unfortunately, many elderly CKD patients then don’t engage in advance care planning.3
This happens across healthcare. It may be more challenging with conditions like CKD — since its a silent condition, people don’t have context for it and often don’t react to a CKD  diagnosis (in good and bad ways) the same way as they do to something like a cancer diagnosis.
How can we ensure people understand what events, diagnoses and prognosis mean for them or their family member so they can better engage in their care?
Look for Disconnects
Look for places where there are disconnects or “non-adherence.” Is there something people frequently don’t do or keep doing?  It’s often a sign we’re taking some key piece of knowledge or understanding for granted.
Repeat the Message
Especially if it’s a new diagnosis, emotionally people may not take it in the first time, even when it’s explained well with empathy. How do your hospital or office follow-up with people afterward to ensure their family caregiver understands? How do you ensure the message is repeated when people come back in for any follow up?
Peer Support
People who have gone through or are starting to deal with the same thing can also help  people understand the situation and learn to cope with it. Connecting people with others can help them wrap their brain around things.
How do you ensure candor and understanding? Share your best practices.

Catch up with Geri
April 9-10 at the Lown Conference in DC
April 17:
•   Catch her in a panel on family caregivers and care transitions with MaryAnne Sterling, Danny vanLeeuwen, and Amy Cain at the Beryl Conference in Chicago.
•   Also on April 17: join Geri, MaryAnne and Danny for the Chicago Participatory Medicine Reception in the Living Room at the Chicago Hyatt: 

1. Schell JO, Patel UD, Steinhauser KE, Ammarell N, Tulsky JA. Discussions of the Kidney Disease Trajectory by Elderly Patients and Nephrologists: A Qualitative Study. American journal of kidney diseases. 2012;59(4):495-503. doi:10.1053/j.ajkd.2011.11.023.
2. Ladin, K, Pandya, R., Kannam, A, Loke, R, Oskou, T, Perrone, RD, Meyer, KB, Weiner, DE, Wong, JB. Discussing Conservative Management With Older Patients With CKD: An Interview Study of Nephrologists. American journal of kidney diseases. Published online: 3 February, 2018, doi: 10.1053/j.ajkd.2017.11.011
3. Ladin, K., Buttafarro, K., Hahn, E. Koch-Weser, S. Weiner, DE. “End-of-Life Care? I’m not Going to Worry About That Yet.” Health Literacy Gaps and End-of-Life Planning Among Elderly Dialysis Patients. The Gerontologist, Volume 58, Issue 2, 19 March 2018, Pages 290–299, doi: 10.1093/geront/gnw267

Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn


Tags: patient engagement, communication, family caregiver, patient education, patient
Posted: Tuesday, March 06, 2018

Putting Family Caregivers on the Map


Geri Lynn Baumblatt MA

Here’s question: when a patient comes in for an appointment, a test, procedure, to the ED, or is diagnosed with a new condition — how many patients are in the room?
If a family caregiver or care partner came with them, there’s probably at least 2. We now know that informal caregivers don’t just have problems like poor sleep and depression, but are at risk for a large range of health issues: injuries, social isolation, substance abuse, strokes, heart attacks, chronic conditions, and increased frailty. They often skip their own medical appointments, stop eating well, or getting regular exercise, and they’re often stressed. Studies show that years of caregiving stress can impact their immune systems for up to 3 years after caregiving ends,1 take many years off their life,2 with a number of caregivers pre-deceasing the person they care for.
The more I think about it - because we can know when caregiving begins or escalates, it’s a discrete moment in time when we can both give the caregiver the support and resources they need to prevent serious health issues and help ensure patients get good care and support at home. 
Who me?
Unfortunately, people often don’t self-identify as family caregivers. And they don’t ask for help, because they don’t realize how their life is about to change. I work in healthcare, and it took me a few years to recognize that I was also a caregiver for my dad — let alone that it was having an impact on my health and well being.
How might we better understand who cares for the patient, and who cares for the caregivers?
Map the Caregiver Ecosystem
Talking with people is helpful, but the Atlas of Caregiving found that when you have people draw their caregiving situation, it adds dimension and details they often haven’t thought about. This can reveals surprising insights — and it’s a way to introduce the topic and help people identify as a “caregiver.” It can help normalize it. After all, people often assume the chaos they experience with caregiving is unique to their family.
This quick CareMap process creates a visual and for them and an artifact to share with the healthcare team that diagrams their ecosystem:

•   Do they live with the patient, nearby, or do they caregiver from a distance?
•   What does their support network look like?
•   What’s their relationship to the medical caregivers?
•   Are there others in their network who aren’t being leveraged and could help provide support?
CareMaps can be done with paper and pencil or with a new, free desktop app. And they provide surprising insights. A CareMap for a woman who had been caring for her husband for many months revealed she was also caring for a disabled child at home. The care team had no idea, and realized when they were asking her to bring him for appointments or other tasks, they were creating other challenges.
CareMaps are a snapshot in time.
Have people update their CareMap over time. This can also provide valuable insights. I’ve spoken about my own distance caregiving experiences for many years and only after drawing my own CareMap did I realize that my mom’s best friend (who is a fierce advocate for her locally and often gives her rides, etc.) usually goes away for the winter. But we didn’t recognize, let alone plan for this.
I also realized my mom, who is in her 80’s, is a key caregiver for many of her friends. So when she’s out of commission, it’s nontrivial for many other families who rely on her to look in on their parents or aunts in her senior residence. But I also hadn’t thought about how much of her identity and sense of worth comes from the care she gives.
Watch One, Do One…
A couple short videos can quickly walk you through how to create a CareMap. Do one, and see what you learn. Then try it with the informal caregivers you work with. 
Catch up with Geri
April 9-10 at the Lown Conference in DC
April 17:
•   Catch her in a panel on family caregivers and care transitions with MaryAnne Sterling, Danny vanLeeuwen, and Amy Cain at the Beryl Conference in Chicago.
•   Also on April 17: join Geri, MaryAnne and Danny for the Chicago Participatory Medicine Reception in the Living Room at the Chicago Hyatt.
1.      Glaser, J. & Glaser, R."Chronic stress and age-related increases in the proinflammatory cytokine IL-6.” Proceedings of the National Academy of Sciences, June 30, 2003.
2.      Epel, E.S. et al, From the Proceedings of the National Academy of Sciences, Dec 7, 2004, Vol 101, No. 49.

Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

Tags: communication, family caregiver, experience, patient
Posted: Tuesday, February 13, 2018

Connecting the Social Dots


Diana Deibel

We are social beings. And social connectedness makes us feel safe so that we can relax, sleep, grow, and maintain our health. When people are isolated from others, research shows this leads to a variety of health issues including depression, being ill more often, and having longer-lasting illnesses. 

But it’s a personal and sensitive topic, so people are often don’t volunteer that they’re isolated. People can become isolated at any age for a number of reasons and life changes -- for family caregivers of any age: their social network contracts and as they focus on their family member. And young adults who are heavy users of social media often feel socially isolated. Now that we know social isolation is an underlying contributor and cause of un-health — how might we address it?
It started with one exercise class...
“Karen” age 55, takes care of her husband “John,” who has Parkinson’s. For both of them, it became hard to go out, to see friends, and even good friends came by less. Both Karen and John became more isolated at home. John’s doctor recommended a seated exercise class. They went, and not only did it help his muscle tone and function, but he met others coping with Parkinson’s, and she met other care partners. Soon they were finding other classes and going to 3, even 4 classes a week. Would they have gone to a support group? Maybe, but certainly not as frequently. And it was more natural social connection, and less stigma of needing support.
How can clinicians and care providers address social isolation?
While it feels like there’s not enough time in the day to really get to know patients, just asking 2 or 3 questions at intake can create connection, insights and help identify socially isolation.
Tell people your office wants to continue to know their patients better, and try asking:
    1.     What are your favorite activities/hobbies and how often do you get to do them?
    2.     Who do you most look forward to spending time with?
    3.     Do you volunteer anywhere or are you interested in volunteering?

You could also ask a new question each time patients come in — or have them fill out a 3 question survey in reception. This can help you suss out who is in the patient’s social circle (and potentially circle of care) as well as what they care about to proactively make it part of their care plan.
Personalizing social interactions
Does your patient garden, cook, read, play cards or love old movies? Any of these can be leveraged for new social connections. Social workers, websites, the library, or religious organizations often have lectures, book clubs, cooking classes, or volunteer opportunities. No one can be versed in all the local goings-on, but knowing a few organizations that provide free social gatherings can help you know where to point patients, without geography or cost becoming a barrier.
Also, keep in mind that people usually need some help or a good excuse to show up the first time. After all, you need to feel safe to socially engage. So just like you’d help someone set a health goal, action plan this with them. Could a friend or neighbor go with them? Might another patient with similar interests meet them or start a book club with them? Do they need help figuring out how to get there?
Volunteering is a great way to get people out meeting others in the name of doing good. It’s not intimidating to show up; and people feel needed and valuable. And, as a bonus: it’s one of the top things that makes everyone happy. A national survey by the UnitedHealth Group found
    •       76% of people who volunteer feel healthier
    •       94% say it improves their mood
    •       25% say it helps them manage a chronic condition, stay active, and takes their mind off of their own problems
Group appointments and classes
These are another great way to bring people together in the name of health and have them meet, interact, and support each other. What about hosting a stress reduction or better sleep class? New friendships grow out of groups - and people feel they’re not the only ones dealing with a chronic condition or challenge.

How will you help address social isolation with your patients? Share what you try or are thinking of trying. 

Geri Lynn Baumblatt, MA: For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

Diana Deibel is a Senior Voice UX Designer who has worked for years in the healthcare space, crafting connections between patients and clinicians and helping motivate patients on tough topics. You can find her on Twitter, ready to chat @dianadoesthis

Tags: patient engagement, family caregiver, engagement, experience, listening, patient
Posted: Wednesday, January 17, 2018

Time For Your Social Network’s Colonoscopy: Helping people take action and gleaning new insights.



Shai Levi

Preventive medicine is a great way to prevent and treat problems early. But there’s a problem: while clinicians recommend flu shots and screening colonoscopies and insurers often pay for them, participation rates are low.
Of course, many people don’t take part because they don’t see themselves as patients. After all, they’re generally healthy -- so why act? Behavioral-science attacks this by trying to understand and influence people’s decision-making processes:
  • Are people aware of the risk?
  • Do they understand the guidelines regarding who should get screened?
  • And do they have any sense of urgency to take action now?
Clinicians are in the role of medical expert. Their recommendations are influential, but it’s only part of an individual’s decision-making process. What about:
  • Pain or discomfort?
  • Time lost at work?
  • And a colonoscopy is an embarrassing ordeal, right?
People don’t usually think of clinicians as experts in these topics and look to their peers. And their peers are only a click away.
A Social Network Story
At age 63, David Ron was diagnosed with colorectal cancer. Sadly, it took his life 3 years later. David created a one minute video that posted to Facebook when he passed away. In it, he talks about why he postponed screening for 13 years. He felt healthy and thought his risk for colon cancer was remote. So he didn’t see the point. Then symptoms appeared, and it was too late. He encourages people to get screened and avoid his fate.
The video (which can be viewed here) went viral. In Israel, it was adopted by organizations fighting cancer; they created Arabic, Russian and French subtitles and boosted it across Facebook. It’s been seen by over 400,000 people in the past year. Many younger people asked their parents if they’d been screened and nudged them to go. It’s hard to assess the impact on actual screenings, but initial measures showed that at least 1% of people who saw the video were motivated to get screened. And it contributed to the larger task of normalizing the conversation.
A personal story is always compelling, but most people don’t talk about their colonoscopy or stool test over drinks or dinner. However, on social networks people are more comfortable posting, commenting, “liking” and sharing about uncomfortable or controversial topics. They vocalize their opinions, get feedback from their peers and friends, and influence other people’s minds.  
So, in a world where people don’t get to spend much time with their doctor and where clinician recommendations can be seen as checking a “good patient” box -- or may even be suspect as unsafe (think vaccines), people turn not just to Dr. Google, but less consciously to the their social networks. They learn if others are getting the flu shot this year, or getting colonoscopies or mammograms at age 50. They may not go online looking for this, so much as absorb it in the chatter and conversations.
Turns out, this is a big deal. Because if you come to believe an action is thought of as standard or normal in our culture (a social norm) and you believe your peers and people you respect think you should engage in a behavior (subjective norms) those both play a critical role in your decision to take action. Yep, you’re more likely to do what your friends and peers are doing. And social networks are now a major place where people get those insights.
Insights when AI meets Social Media
A network like Facebook is a good source of data. Every like, share comment, video view, and click is aggregated and segmented. Artificial Intelligence or “AI” can sift through the data and identify patterns and provide insights.
For example, the African American population has a higher risk for colon cancer and should get screened earlier, at age of 45. Yet, screening rates are low. To understand why, 30 different interventions were used to educate people about colon cancer screening and collect data on Facebook. Some were short videos of a local doctor talking about: risk of colon cancer, pros of colonoscopy, the prep, sedation, time off work, costs, etc. These were delivered to people over 45 in a geographical area (250K people fit criteria). The AI picked up a pattern revealing that young African American males in the 45-50 age range responded especially well to messages about sedation during colonoscopy and open access, which reduces time off work.
How can this help you?
  1. Help create the norms
    Anyone working in a hospital or clinic can be both a professional and a peer. Want to normalize advanced directives or flu shots? Have anyone on staff who’s gotten the vaccine or done their directives wear a button or badge that says they got or did theirs.

  2. Consider group appointments
    Conversations from peers can help normalize, reassure, and encourage others in the group to take action.
  1. Consider how to use social networks as part of your patient engagement strategy.
    Do you have a Facebook page, Twitter chats, or other social media presence? The combo of AI and social networks can lead to important insights on what people are saying and what messages resonate with various groups. 

Shai Levi is a Co-founder and VP of product at Medorion in Tel-Aviv. Shai is helping to develop an AI-driven platform that enables population-health teams to effectively activate large populations without being experts in behavioral science or expert marketers. Previously he worked at Allscripts leading their population health analytics R&D. @ShaiLevi1980

Geri Lynn Baumblatt
For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn


Tags: patient engagement, communication, personal healthcare, technology, experience, healthcare, listening, patient
Posted: Tuesday, August 22, 2017

Helping Patients Voice What Matters to Them: Decisions are About More Than Information

Victoria Baskett
Victoria Baskett

“What do you want your quality of life to be like?”

It was a question Victoria never expected to hear from a surgeon, before engaging in a dialogue about his recommended treatment plan. In that moment, she was in control. In a vulnerable situation, she had the opportunity to be the author of her own story.
Victoria’s Story
Just a month before this conversation, I’d been rapidly intubated while still awake to secure my airway, which was closing due to an infection called Ludwig’s Angina. Maybe it was genetics, maybe it was the intubation, or both, but a tremendous amounts of scar tissue formed on my vocal cords. This left my voice sounding raspy -- like I was a chain smoker or always sick.
The recommended course of treatment was 6 months of speech and vocal therapy, followed by surgery if my voice hadn’t improved. Six months of vocal and speech therapy passed and surgery was still on the table.
My physician laid out both options for me and explained the pros and cons of each. For me, the recent memory of being intubated while awake was still fresh my mind. So, the idea of choosing to go through surgery, was frightening. While he explained that I’d be fully asleep for the surgery, he also took the time to understand my emotions. He saw that information alone wasn’t going to change my mind. And he respected my emotions, which created trust.
It helped to know that it wasn’t a limited or forced suggestion, but simply an option for my own personal quality of life. His opinion wasn't interjected, or I didn’t feel like it was. He shared his knowledge, and I had the opportunity to share my thoughts and emotions and make a choice. I feel like people can never have too much information. Knowledge is power when making a decision about your life. That said, our experiences and emotions are important.
So, I had to answer that quality of life question. What did I want? And How did I feel? I decided it wasn’t right for me.
There’s a lot of research and articles on patient reported outcomes and personalizing care leading to overall improved outcomes. I believe that personalizing care is essential. When we switch to the paradigm of person-centered care, we give individuals the ability to decide their own destiny. When you take the time to truly develop relationships with individuals, you have the opportunity to learn what’s important to them and to personalize care to fit their dreams and aspirations.
What’s in a Voice?
Two of the most common phrases I hear from strangers when they hear my now-raspy voice:
“Are you sick?”
“Oh no, you’re losing your voice!”
So, will I ever have surgery on my vocal cords? Well that’s to be determined! For one thing, I like sounding like Nora Jones -- being able to sing like her would be even better.
For me, my voice is also a reminder that I survived an obstacle I wasn’t expected to see the other side of. But more importantly, my voice is a reminder of a surgeon who put down his pen, looked me in the eyes, considered my thoughts and emotions, and let me determine my future -- a situation and dialogue I did not know or believe I would ever experience.
A Voice Lost and Gained
The experience changed my voice both literally and figuratively. I lose my voice frequently. It used to be a deterrent for me in loud situations because I couldn’t talk to people, so I just wouldn’t go to parties or events. But I talk every day for work, I do public speaking, and I interact with people daily. It causes challenges, but Throat Coat® tea and voice exercises have helped me through those challenges. But I found my patient voice, articulating and advocating for the patient experience.
The Takeaway
Patients need information, but information alone is not enough to make tough decisions. People also need to process their emotions. Luckily, Victoria didn’t have to make a now or never decision about surgery, so her anxiety about surgery didn’t cut her off from any options. But in other situations, patients may have a one-time choice where emotions about a new diagnosis or situation may overwhelm them. Research suggests clinicians can help address patient stress by discussing treatment options only after the address emotions. Otherwise, patients may not be equipped to move from learning about their condition to making a decision or taking behaviors to manage it.1
  1. Nunes, et al. A diagnosis of chronic kidney disease: Despite fears, patients want to know early. Clin Nephrol. 2016 Aug; 86(2): 78–86. Published online 2016 Jun 27. doi:  10.5414/CN108831

Victoria Baskett - Victoria Baskett is the Director of Patient Experience at Wayne UNC Health Care in Goldsboro, North Carolina. She is also the Founder and President of the Victoria Baskett Patient Safety Foundation that works to “Improve patient safety by educating patients and families on the importance of finding their voices.” Misdiagnosis, delayed diagnosis, and emergency surgery all led Victoria towards her mission to transform healthcare through patient and family advocacy and safety. Along with her career and non-profit, she currently serves on the North Carolina Quality Center Patient and Family Advisory Council and Board of Trustees, the Patient Safety Movement Handoff Communications Workgroup, and The Beryl Institute’s Global Patient and Family Advisory Council. @vbpatientsafety
Victoria Baskett Patient Safety Foundation (facebook) 

Tags: communication, personal healthcare, shared decision making, empathy, engagement, experience, listening, patient
Posted: Thursday, July 13, 2017

Engaging Patients, Families & Staff with a Promise


Julie Becker
Hannah Arendt once said, “Promises are the uniquely human way of ordering the future, making it predictable and reliable to the extent that this is humanly possible.”
So when UW health wanted to understand and improve the patient experience across their system they started by analyzing quantitative and qualitative patient experience data, which revealed 4 key components:
  • Listening
  • Showing compassion
  • Complete/consistent/understandable communication
  • Showing respect
The next steps included working with their patient experience subgroups and patients to develop a promise that would address the 4 key components and serve as a guide for providing a consistent and exceptional experience.
Why a Promise?
The decision to develop a promise arose as the patient and family experience team worked with subgroups to begin improvement work prioritization. The groups felt that UW Health needed to first build a strong foundation around core competencies that would support providing an exceptional experience with every patient. Though the mission, vision and values were already in place and well known across the system, a gap existed in that the mission, vision, and values did not necessarily reflect what patients consistently told us they value the most through collected data.
In essence, they spoke and we should listen.
Participatory Design
To demonstrate UW’s commitment to honoring their feedback, the promise was born. They solicited input from patients who were admitted in the hospital to help shape the basic structure and content. In personal interviews, they were shown 3 versions of the promise and asked how each one made them feel and what such a promise might mean to them.
The patient and family advisory council (PFAC) members weighed in on each component of the promise. The members were asked to describe what those components might look like to a patient or family member.  Patients specifically expressed that it was important to include “family” in the promise title as a means of  expression about the commitment to partner with not only patients, but their families to provide individual and inclusive care. The final simplified promise evolved to:
We Promise to: Listen with Compassion, Communicate Effectively, and Respect You
From here, the UW PFAC committee supported the development of an expanded version to identify behaviors most valued by patients and families. For example, specific behaviors were added to show how to make communication concrete and actionable:
  • Provide greeting and introduction
  • Confirm understanding
  • Identify and discuss patient and family preferences

The goal is to utilize versions of different lengths so the promise can meet a variety of needs. Once it’s rolled out across the organization, it will be included in all orientations, in printed materials for patients, posted in public spaces like elevators and on LCD screens,  on social media forums and on the public facing website.
Pre-roll out feedback from the staff and patient partners has been positive:
  • The word “promise” is powerful as it means something quite different when we say we make a promise to do something.
  • The promise will help leaders standardize expectations and will be helpful in evaluating performance.
  • The behaviors provide a clear understanding about how all staff can support the promise statements.
  • Patients who participated in the process said it makes them feel more confident that we are willing to “make a promise” to them.
Engaging Patients with a Promise
The promise will be both staff and patient facing. This sets clear patient expectations about how each member of the UW Team will interact with them on a daily basis. It also demonstrates they want to be transparent about that commitment.
A promise is defined as, “a declaration or assurance that one will do a particular thing or that a particular thing will happen”. Developing the patient and family experience promise with patients engaged them in a level of activity that will have lasting positive effects for all patients coming after them. They felt heard and listened to and were excited to be part of building a foundational document for the organization. The team at UW Health gleaned key insights and ended up with a promise that will better resonate with and engage patients.   
Julie Becker, DBA, MBA, BSN is the Director for Patient and Family Experience at UW Health in Madison, Wisconsin.  She previously served as the Chief Patient Experience Officer for Lovelace Women’s Hospital and as VP for Patient and Family Experience for Wheaton Franciscan Healthcare. She holds a nursing degree, a Masters of Business Administration with an Organizational Development focus and a Doctorate of Business Administration specializing in Leadership.

Tags: patient engagement, communication, employee engagement, engagement, listening
Posted: Wednesday, June 14, 2017

When Side Effects Get in the Way


Mia DeFino

Patients, clinicians, and healthcare organizations all want people to feel better so they can live their lives to the fullest. Unfortunately, the side effects of treatment can get in the way.
Mia’s Story: 5 meds, lots of side Effects
When first diagnosed with complex regional pain syndrome (CRPS) Mia’s physiatrist prescribed five medications. Not surprisingly, it was confusing which medication was supposed to help with what symptoms. By the time Mia came back the following week she was more miserable: agitated and unable to sleep, she had a rash on her face, and was sick to her stomach.
Turns out, she was sensitive to a lot of medications. Although she wanted to be a “good” patient, she couldn’t keep taking the meds. But her doctor was hesitant to make any changes and didn’t offer alternatives. Mia left feeling scared, frustrated and like the side effects she experienced weren’t being taken seriously.
Fast forward 3 years:
Mia was diagnosed with chronic migraines. She got relief from medication, yet it also made her dizzy, nauseous, and tired. This time the side effects conversation was different. Her neurologist worked with her through many rounds of medications and figured out if she took them as needed just on really bad days it helped her avoid the side effects, while still providing pain relief.
Geri’s story: More than a nuisance
As a family caregiver, Geri had a similar experience when medications her dad was on in the last years of his life caused his skin to thin and itch.The itching drove him crazy and kept him and those taking care of him from getting decent sleep. As a family caregiver, it was frightening to scratch his back, hoping to give him relief but not tear his fragile skin. When the family brought up the itching with his team, it was discussed as more of a nuisance -- the cost of treating his conditions.
Side effects are challenging, especially when patients take more than one medication. But even with a single medication one study that looked at statin side effects, found that 87% of patients reported telling their physician about side effects, and unfortunately physicians often rejected a possible connection to the medication. What would you do? Keep taking the medication ...or become “non-adherent”?
Changing the Conversation
It doesn’t take much to change the tone of the conversation and affirm a symptom may be due to a medication and that it’s a real issue. Even when complaints don’t fit into documented side effects, if we want people to engage in their plan of care, working this out can make all the difference to their peace of mind, quality of life (QOL), and participation. Letting people know you’ll work with them to find the right treatment where their QOL is improved builds trust.
Patients can also report side effects to the FDA on MedWatch. This can also help people know they’re contributing to a better understanding of side effects for everyone.
People want to feel better and it’s hard when treatment makes them feel worse or causes a new problem. People don’t like to challenge their care team or seem like complainers, so by the time they tell you about a side effect, it’s probably really bothering them.

Mia’s story: another 3 years later
Mia found that changes to her diet and lifestyle could help minimize the number of medications she needs to take. At Mia’s first appointment with her new primary care physician, one of the first things they talked about very directly is: Side effects. As Mia explains: I shouldn’t have to experience more symptoms to feel “better.”

Mia DeFino, M.S. Mia has personal experience with chronic diseases and managing her health with multiple healthcare providers, recognizing the need for translating complex ideas in medicine and healthcare for multiple audiences. She supports people dealing with complex chronic diseases through finding physicians and resources in their area. She’s an independent medical and science writer in Chicago www.miadefino.com. @mia_defino

Tags: communication, personal healthcare, family caregiver, empathy, pain management, patient education, experience, healthcare
Posted: Tuesday, May 09, 2017

Nothing but the Truth: Encouraging honest patient disclosure on tough topics

By Amy Bucher, PhD & Geri Lynn Baumblatt, MA

Amy Bucher, PhD 
How much alcohol do you drink each week?
Do we need to do an STD test today?
Have you been feeling depressed?
Are you taking your medication every day?
Does your family have enough to eat?
Did you flinch when thinking about how you’d answer any of these questions?

One of the first obstacles to improving health outcomes is getting an honest assessment of someone’s current behaviors and barriers to change. There are many reasons why either the patient or the provider might not be able to have a frank and accurate conversation.
Why are these conversations so difficult?
On the patient side:
·       It can be difficult for people to share sensitive information. They may be embarrassed to admit “bad” behavior, especially with respect to topics like smoking, drinking, or sexual activity.
·       A related phenomenon is social desirability. People want to please providers with the “right” answers, so they may not admit they’ve skipped medication doses or indulged in multiple martinis. They may not even admit these behaviors to themselves!
·       Sometimes people feel embarrassment, shame, or failure from their behaviors.
·       Or they may not understand critical information the provider needs and unintentionally omit or misrepresent something.
On the provider side:
There’s pressure to move quickly through a visit and document specific information for reimbursement. Time pressure forces providers to focus on the most physically pressing issues a patient has, which can sometimes overlook the root causes of health problems. Depression and social isolation, for example, are highly correlated with poor cardiac health and stroke incidence, but may not fall within the realm of a typical provider conversation.
And unfortunately, most providers do not receive training in skilled communication as part of their medical education, so they may not have the skills to elicit honest and meaningful responses from reluctant patients.
Provider communication skills are critical not just for the content of conversations, but also for the non-verbal responses that flavor them. Human beings in general are incredibly sensitive to nonverbal cues like facial expressions and tones of voice, and can easily detect disapproval or other negative emotions. Even a provider who is trying to express acceptance and encourage disclosure may reveal a negative response through nonverbal behaviors. To avoid this, providers need an awareness of their nonverbal behaviors and practice in controlling them.
Consider Amy’s recent experience:
At a recent wellness visit, being aware of the above issues in patient communication, Amy decided to be as forthright as possible. When the doctor asked how much she drinks in a typical week, Amy offered an honest response, knowing it was more than clinically recommended. But the doctor’s reaction was much more negative than Amy anticipated; although her drinking exceeds guidelines, it’s not outside of social norms. The doctor paused, and sat up straighter. Her facial expression turned very stern. Then, she told Amy that behavior was incredibly unhealthy and reviewed the clinical guidelines for alcohol. The conversation completely changed in tone, and in return for her honesty, Amy felt uncomfortable.
A physician friend later told Amy that she automatically does mental multiplication for any self-report data to correct for patient under-reporting. Amy’s doctor may have thought she was drinking much more than she confessed and reacted to that larger number. So even though Amy attempted to give the best possible information, the doctor’s reaction discouraged future disclosures.
How can we encourage honest disclosure?
If you're in the provider seat, you have an opportunity to help your patients feel normal and safe. When you ask questions about potentially sensitive topics, let patients know they’re not the only ones who face these challenges. This also creates a cue that you’re not going to scold them or be disappointed in them. Try prefacing your question with normalizing statements, such as:

“A lot of people I talk to have trouble taking medication…”

“You know, a lot of people with diabetes tend to get frustrated or down. How have you been feeling?”
Using a “universal safe reflection” as a response can help too. Rather than offering any kind of an evaluation, reply with a more neutral phrase that helps you restate the patient’s concern. For example:
“It sounds like you’re struggling with . . .”
“You’re not ready to . . .”
The universal safe reflection technique can reduce the appearance of judgment, and offers an opportunity to clarify your understanding by restating what you heard.
Talk to the... robot?
Providers increasingly have additional tools in their toolkit to engage patients outside the clinic. Digital tools enable patient engagement in a virtual setting through interactive calls, online surveys, and digital coaching programs. These digital technologies tend to elicit more honest responses from users than face-to-face conversations.
Amy found this to be true when working with a digital behavior change platform. Her team matched self-reported data about taking medications through digital interaction against verified claims information and found that people were pretty honest about their adherence. Geri has also seen this is in interactive calls and online patient engagement programs, where people often disclose whether they smoked in the weeks before surgery, if their child is self harming, or if their family has enough to eat.

Why are we more honest in virtual interactions?
We have a hunch that even though people know their responses will reach real people, they have a sense of privacy. Similar to how awkward conversations can be easier in a car or on the phone where there’s no face-to-face contact or immediate nonverbal feedback, it can be less distressing to discuss embarrassing subjects through a technology medium. People also know that a digital system is unlikely to deliver criticism--and in fact, many digital health tools are deliberately programmed to offer supportive and encouraging feedback.
As providers look for ways to integrate digital tools into their practices, one that has some promise for facilitating patient disclosure is to have patients go through a technology-enabled intake where they can share sensitive information in advance of a visit. This also gives providers time to prepare a more neutral response that facilitates a productive discussion.
Join Amy at the upcoming HxRefactored conference in Cambridge, MA on June 20-21. Through an inspired mix of thought-provoking talks, workshops, and discussions, HxRefactored applies design, science, evidence, and theory to re-imagine the entire health journey and find new ways to actually deliver that vision. Amy will be co-presenting a workshop on Behavior Change Design for Healthy Aging with Mad*Pow’s Dustin DiTommaso, and participating in a panel on Motivation and Health.

Join Geri:

Tags: patient engagement, communication, engagement, healthcare, listening, patient
Posted: Monday, March 20, 2017

Empowering Patients with a Common Language


Just one week after her 29th birthday Liz Salmi suffered a grand mal seizure and was
rushed to the ER. A CT scan of her brain showed a large mass, and after a nine-hour brain surgery she was diagnosed with a gemistocytic astrocytoma -- a slow growing, but malignant brain tumor with a high rate of recurrence.
And recur it did. 

Six months after Salmi’s first surgery her tumor grew back sending her into a whirlwind of treatments over the next two years, including a second brain surgery, struggles with seizures, a rigorous schedule of physical and occupational therapy, and 24 months of chemotherapy.
Fortunately, Salmi received excellent care through her neuro-oncology nurse practitioner.

“I used to refer to her as ‘Super Awesome Nurse’ because she handled my nausea, headaches, and constipation -- all the side effects of treatment,” remembered Salmi. “She would field my daily calls and emails, tweaking and adjusting medications or suggesting simple life hacks to help me through what I was feeling.”
But Salmi never knew the kind of care she was receiving had a name until five years after she completed treatment and started working for a healthcare nonprofit advocating for access to palliative care for all people facing serious illness.
“After I took the job it took a few months for me to realize I am a person who received palliative care,” said Salmi. “At the time, I assumed the care was the result of me being lucky enough to have been paired with an amazing NP (which could still be true); but now I know the name for it is palliative care.”
Why did Super Awesome Nurse never tell Liz she was receiving palliative care? We asked her!
“While I, as the healthcare provider, may have viewed much of the care that was being rendered as palliative in nature, not all patients are ready or willing to consider that most types of brain tumor care is palliative,” said Mady Stovall, NP, former neuro-oncology nurse practitioner and current PhD student at Oregon Health and Science University.
Avoiding the term “palliative” initially is understandable. After all, there’s a lot of confusion between palliative care and hospice. And no one wants to cause panic that a condition is more serious or has suddenly become more serious.
“The perception in cancer care is that palliative care is often (and inappropriately) equated with hospice care,” explained Stovall. “Sadly, this misconception prevents many patients, families, and even healthcare providers from being able to capitalize on the expertise and resources of palliative care providers and programs. “
However, if Salmi had changed health systems or had to find a new provider, she would not have had the words to translate the care provided by this “super awesome” nurse to make sure it continued or was re-initiated as needed. She didn’t have the language to ask for that care and advocate for herself.
“Having coordinated palliative care was crucial to my quality of life because my brain tumor was causing a lot of seizure activity,” explained Salmi. “I tried seven different anti-epileptic drugs (AEDs) over five years to finally land at the right combination of medication that worked for me. Seizures are scary and make you feel as if you don’t have control over your own body. That’s why palliative care is essential; these providers listen to your concerns and fears and make sure your medical as well as emotional needs are addressed.”

Giving People Language for Self-Advocacy
While we shouldn’t overwhelm patients with clinical language, helping them understand what things like palliative care ARE and ARE NOT improves their ability to advocate for themselves.
In fact, it was only after her recurrence that Salmi learned about oncology social workers. Had she known about this role, she would have asked for it when going through surgery and treatment for her initial tumor.
Not everyone is going to become an expert patient in health communications, but educating patients and families as they get and make decisions about care can help them tell us what is most important to them.

*As an additional note we are proud to announce that Liz and Geri will be part of a panel at Stanford Medicine X on advance care planning. Joining them will be palliative physician Dr. Michael Fratkin, researcher Rebecca Sudore, and MD/JD: Dr. Aretha Delight Davis.  

Liz Salmi is a curious person-turned citizen scientist who turned her brain cancer diagnosis into an open source chronicle of the patient experience. Today, her blog TheLizArmy.com receives over than 30,000 visits each year. Her interests include patient-driven research, the quantified self, open source health data, and neuroscience. When she's not blogging, Liz is a patient advocate for OpenNotes on national movement that encourages health care professionals to share the notes they write with the patients they care for, with the goal of improving the quality and safety of care. @TheLizArmy

Tags: patient engagement, personal healthcare, empathy, health literacy, patient education, engagement, experience, healthcare, listening
Posted: Tuesday, January 24, 2017

Do Your Patients Know What's in it for Them? Articulating the Value of Patients First


By Geri Lynn Baumblatt, MA & Frieda Wiley, PharmD, BCGP, RPh

When Frieda first began practicing as a pharmacist in managed care, she called a patient (we’ll call her “Monica”) to conduct a review of her medications. Monica was on the verge of hanging up until Frieda asked, “Have you recently been experiencing any bleeding or bruising?”
Monica paused and said, “You know, come to think of it, my gums do bleed whenever I brush my teeth. Could one of my medications be causing that?”
Frieda knew she’d recovered from what would have been an epic patient engagement fail. Instead, she used that 15 seconds to establish credibility, value, and concern, but most importantly, to get at why a medication review was meaningful for Monica. She picked a common side effect that would instantly grab Monica’s attention. Otherwise, the call might have been seen not as a service, but a nuisance — a call to update records. Or Monica may have suspected the call was gathering information to see if her insurance should keep paying for her medication. But a “medication review” didn’t immediately sound like something that would benefit her.
Articulating Value Up Front
We often assume patients and families know why we’re asking them certain questions or to do certain things: We repeatedly ask them about pain levels, tell them to avoid salt if they have heart failure, or recommend caretakers rotate bedridden patients frequently. But the value we recognize and take for granted is often not immediately obvious to patients, and that makes it even more important that we, as provider, articulate those benefits up front.
Even when a patient is admitted and we ask them to repeat and confirm information, patients often don’t see the value. Instead, the repeated questions can seem annoying or even incompetent. But opening the conversation with, “To make sure we’re keeping you safe, I’m going to re-ask you a few questions…” can shift patients' reluctance to cooperation and trust.
How can we present ourselves as approachable?
There is no cookie-cutter approach to establishing rapport. A tactic like the side effect question can quickly engage a patient who otherwise might not see a medication review as beneficial; but there are other ways.
For example, whenever a patient mentions a hobby or activity, take a few seconds to document it. At the next visit, follow up with them about that personal detail. “Last time I saw you, you were spending a lot of time in the garden; how is it looking now?” Better yet, relate it back to their health. “Last time I saw you, you were doing a lot of gardening, but your arthritis was getting in the way. How is the garden looking? Are you able to spend more time working on it now that you started the new medication?”
Reframing this question into a more insight format kills two birds with one stone. Not only can a provider further improve patient rapport by demonstrating compassion and insight, but it creates an opportunity to develop a more open and fluid dialogue. And in a world where providers are pressed for time to connect, this can go a long way.

Tags: patient engagement, communication, family caregiver, empathy, health literacy, expectations, engagement, experience, healthcare, listening, patient
Posted: Tuesday, December 20, 2016

The Expectation/Experience Gap


Co-author: Carly Thanhouser

Even though clinicians have great insights, if they haven’t gone through it, there’s only a partial understanding of the lived realities. Interestingly, as patients become more and more active in their care, they have higher expectations of the care that they will receive.  >>>

Tags: patient engagement, empathy, patient education, expectations
Posted: Tuesday, November 29, 2016

A Tale of 2 Daughters: Connecting the Dots for Family Caregivers


Co-author: MaryAnne Sterling

Family caregivers are the front lines of healthcare and currently 90 million+ strong. Identifying and training the care partner or family caregiver is essential. However, an important piece of this puzzle is missing -- connecting family caregivers with the support they need both inside and outside of the healthcare system to effectively manage the care of their loved one. >>>

Tags: patient engagement, family caregiver
Posted: Saturday, October 29, 2016

Highlights from the "Clarity is Power!" Health Literacy Month Series

The end goal of health literacy is to empower patients, families, communities and clinicians with clarity and confidence to engage in care. Here are just a few highlights from the Clarity is Power series. 
See more great articles from the 2016 Health Literacy Month Series.

Tags: shared decision making, family caregiver, health literacy, patient education
Posted: Friday, September 30, 2016

A Clear Path to Better Recovery


By Emily Azari with Dr. Elizabeth Wick

This article is a preview of Emmi's 7th Annual Health Literacy Blog Series: Clarity is Power! Clarity and effective patient communication isn’t about “getting patients to follow through.” Rather, it’s about fostering a partnership with the patient.  >>>


Tags: patient engagement, health literacy, pain management, patient education
Posted: Wednesday, August 31, 2016

It's Hard to Hear You When You're Not Listenable


Co-author: Don Rubin, PhD

Listenability is an antidote to the language rut health professionals sometimes fall into. Too often we recite routinized speeches, but don’t speak in a way that encourages people to process the information. The same care we invest in making our patient documents readable should be applied to making our talk listenable. Try these best practices to make sure your communication style is listenable. >>>

Tags: communication, health literacy
Posted: Wednesday, July 27, 2016

Fostering Patient and Family Partnerships


Co-author: Doug Della Pietra

At Rochester General, the PFAC was taking on big challenges. However, big changes take longer to see results. We can’t do everything all at once, so we asked: If we significantly improved the patient experience over the next 3 years, what will we have changed and implemented? >>>

Tags: communication, patient advisory councils
Posted: Tuesday, June 28, 2016

Up and Out: Overcoming an Energy Canyon

One of the most fascinating parts of my job is observing patient focus groups. They’re always interesting, sometimes riveting. Whether the topic is breast or prostate cancer, diabetes medications, chronic pain, or smoking cessation, we often ask the participants: 
Would you be interested to join any kind of in-person on online support group or community? >>>

Tags: shared medical appointment
Posted: Wednesday, May 25, 2016

Integrating the Whole Person Into Integrative Medicine


Co-author: Sangeeta Agarawal, MS, RN

Miguel is a 53 year old woman of Mexican descent. She crossed the border 25 years ago and still cherishes her culture and maintains many traditional values and ways of living. A year after being diagnosed with diabetes she arrived at the hospital with hyperglycemia and wounds that aren’t healing. She felt frustrated and helpless.  >>>

Tags: shared decision making, integrative care
Posted: Thursday, April 28, 2016

The Motivation Equation: Creating Smarter Patients


Co-author: Keith Joseph, PhD

Giving instructions is a position of power; but proactively asking ourselves and colleagues whether a treatment or test is needed can help reduce overutilization. Then explaining why and having more of a shared decision making conversation can also help ensure if it’s appropriate and means patients are less likely to go home with unanswered questions.  >>>

Tags: shared decision making
Posted: Tuesday, March 29, 2016

Engaged with Sax


Co-author: Danny van Leeuwen

Shopping for a new neurologist I had three screening questions:  

  • What's your response time to emails? 
  •  Do you use OpenNotes?  
  •  How would you work with my acupuncturist?   >>>

Tags: patient engagement, communication, shared decision making
Posted: Friday, February 26, 2016

Diagnosing Willingness: Expanding our perspective of what patients are willing to try


Co-author: Allison Massari

How can we better understand what an individual is willing to do as they participate in their own recovery? And do we sometimes underestimate what someone is willing to do, because we lack individualized insight? We looked back on our own experiences and what we were willing to do to regain our health and wellbeing. >>>

Tags: patient engagement
Posted: Thursday, January 28, 2016

An Rx for Writing: 1-3x daily, unlimited refills


Co-author: David Tabatsky

When faced with a patient who is scared, tired and confused, professional training and knowledge helps caregivers make assessments and prescribe treatment. But how can you ease anxiety and address fears? Think about prescribing pen and paper. >>>

Tags: patient engagement
Posted: Thursday, December 17, 2015

Accountability and Appreciation - Two Sides of the Same Coin


Co-author: Dr. Sara Laskey

When we find ways to acknowledge staff and providers, we also identify those things to which we hold them accountable: consistent rounding, improved communication, hard-wired service recovery, and everyday expressions of teamwork.  >>>


Tags: employee engagement
Posted: Saturday, November 28, 2015

Just the Drug Facts: Helping Patients Understand Medications

Catalina Gorla
Co-author Catalina Gorla (featured left) is the COO and co-founder of Informulary, Inc., a Dartmouth College spin-out that creates tools like the DrugFactsBox to help people understand what drugs can and cannot do. catalina.gorla@informulary.com  | facebook.com/informulary 

Consumer Reports magazine and Informulary - a drug data company - recently ran a series of focus groups to find out how people think about prescription drugs. They learned 3 things.

First, people strongly believe they can find all the information they need online. Unfortunately, with online medication info, if the information is free, there’s a good chance it’s marketing masquerading as fact.

Second, people also look for answers on side effects in crowd-sourced data or anonymous patient reviews. But this source is also fraught with issues – who’s really doing the rankings and why? The answers from a self-selected group of people “liking” a medicine can be very misleading.

Mainly, they learned that despite confidence in online sources, people have lots of questions and few good answers. When a patient gets a new drug, they want to know:

•    Is it safe?
•    Can it help me?
•    Is this drug worth the cost?
•    If I can’t feel the benefit, why should I keep taking it?

We know that engaging patients in a shared decision making process around the decision to start a new medication can help them understand why they’re taking it and improve adherence. But it can still be challenging for clinicians and patients to get credible answers to these questions.

The best way to get prescription drug information is the FDA itself. Before it approves a drug, FDA medical and statistical experts review all the data and make it freely available. They see all the evidence, including studies where the drug didn't work. You can learn what these independent experts think about how drug benefits and side effects stack up and what open questions remain about benefits and side effects.

FDA documents are a goldmine of information. They can be found at Drugs@FDA, and there’s a video explanation on how to use the site published in the BMJ. Unfortunately, it can be challenging to find what you’re looking for. The documents aren’t organized in a standard way and can often number in the 1,000s of pages.

A new resource, the DrugFactsBox library, summarizes the FDA information in a clinician and patient-friendly format. Developed based on years of research by Drs. Woloshin and Schwartz, professors at the Dartmouth Institute, the library is currently in beta at DrugFactsBox.co., so anyone (clinicians and patients) can freely access information on 5 medications.

Feedback on DrugFactsBox is welcomed via this form or you can contact Catalina directly at catalina.gorla@informulary.com.

Tags: patient engagement, shared decision making
Posted: Monday, October 26, 2015

Narrating Change: People Can’t Be Motivated by What They Don’t Know

Burn gel relieves pain on contact. You can see a cut or scrape start to heal over the course of a week. And when a medication helps us feel better, we’re motivated to keep taking it. When change happens quickly, it’s easy for people to see or feel the change and be motivated. But it’s much harder to be motivated by small, incremental changes we don’t notice.
When a car accident in grad school landed me in long-term physical therapy, at first there were real milestones: removing the sling, stiffness in my neck noticeably improved, but then I felt like I hit a wall. Was the physical therapy doing anything? Small comments from various therapists about improvements they would notice and narrate when they saw me a week or two later really made a difference to my psychology to keep going.
In Annette McKinnon’s article on becoming a more engaged and health literate patient as she learned to cope with rheumatoid arthritis, she explains how a turning point came for her when her trusted physical therapist convinced her to persist with one easy exercise as part of her daily routine. The moment that made such a difference was a simple comment by a new specialist. During a routine trial assessment he commented, “You have good muscle tone in your abs.”
As Annette explains, “This amazed me. After 15 years with sore feet and hands and very little exercise, making an effort to do one small exercise actually made a difference. The fact the doctor was a specialist who saw many people with RA gave the comment even more impact. For her it was a mere observation, but for me this information was new motivation. I redoubled my efforts to change for the better and be more active, and started learning Arthro-Pilates.”
Narrating these small changes for patients can have profound effects. Sometimes it’s done during a physical exam, or it can be narrated as notes are entered in the medical record. How are you helping people recognize incremental improvements?

October Health Literacy Month Blog Series

Check out articles by:

  • Patients, like Randi & Gary Oster, on the transition from pediatric to adolescent/adult care.
  • Family caregivers, like Regina Holliday, on transitioning her husband from hospital to at-home hospice.
  • Thought leaders, like Carol Levine, on health literacy and palliative care.
  • Health literacy researchers, like Michael Paasche-Orlow, on the role it plays in care transitions.
  • Physicians, like Dr. Joseph Geskey, who writes about the challenges of transitioning his own father from hospital to home.
  • And patient engagement designers, like Emily Azari, on Transitioning to caring for an Ostomy

To view links to all the articles in this year’s series on health literacy and transitions, visit EngagingThePatient.

Tags: patient engagement, health literacy
Posted: Thursday, September 24, 2015

Time to Give Up the Car Keys?


Engaging Patients & Families in Conversations about Aging & Driving

Nate O'Keefe
Co-author Nate O’Keefe (featured left) is the co-founder and CEO of Roobrik, a Durham, NC-based startup that builds online tools designed to help older adults and their families make informed care decisions. Nate has spent more than 10 years with companies including Modality, Epocrates, and AthenaHealth creating products that deliver high stakes health and care information to clinicians, students, patients, and family caregivers.

When families of aging parents ask clinicians and caregivers: “Should mom keep driving?” you know it’s a loaded question. You may feel like you’re being asked to be the bad cop. How do you make recommendations that minimize risk for your patient and other drivers and pedestrians?  How do you help families think through the trade-offs between safety and independence?
It can be even more difficult to broach the subject when health conditions arise that make driving riskier and you’re NOT asked about it. For most of us, driving was our first real taste of independence and it defines our ability to be productive, social, and engaged in society.  How do you steer someone down the path of cutting back or stopping while helping them understand there are alternatives (and even benefits) to giving up the keys?
For those of you who don’t talk with families about driving as part of your routines, or who still struggle with difficult situations, we offer three resources:
  1. Your clinical peers
For many patients, an office visit is not sufficient to fully evaluate driving ability, and without an accurate picture of ability, you risk having your patient either stop before they need to or continue for too long. Here’s where an occupational therapist can be your best friend. In a standalone practice or as part of a driving clinic, OTs can do functional clinical and road testing to assess ability and recommend modifications to make driving safer. Find an OT-CDRS.
  1. Best practices
In 2010, the AMA and NHTSA collaborated to produce the Physician's’ Guide to Assessing and Counseling Older Drivers. This free publication is extremely comprehensive and highly practical, covering assessment, rehab, medical conditions, state laws, and much more, with frequent sample scripts to use for difficult situations and conversations.
  1. Tools to engage patients & families
    This issue often marks the transition from doctor-patient to a doctor-patient-caregiver relationship. All of the sudden, you’re not just engaging directly with the patient but also their concerned family. After all, the family is often responsible for carrying out the decision and supporting the patient through this transition. In addition to traditional resources like the AARP, free interactive tools to assess driving ability like the one developed by Roobrik can help families assess the situation and make a plan for limiting or stopping driving.
Remember, this issue if often the beginning of an important transition. Driving safety presents an opportunity to start a dialogue about changing needs and to put a process in place that encourages open communication around not just health and wellness issues, but the care issues that will begin to define this new phase of life.
October is Health Literacy Month on EngagingThePatient

Hear from patients, family caregivers, clinicians, health literacy researchers, patient educators and others about the intersection of health literacy and transitions every weekday in October. Visit engagingthepatient.com to read the articles or to subscribe to the blog.

Tags: patient engagement, communication, family caregiver
Posted: Thursday, August 27, 2015

Helping People Find Their Language of Recovery


David FestensteinCo-author David Festenstein (featured left) is a communication specialist, coach and professional speaker who made a remarkable recovery from a stroke which had paralysed his right side and left him unable to walk. More about his story can be found at www.strokerecovery.co.uk. To connect with David, please email him at david@strokerecovery.co.uk or by phone +44(0)1923 663275 in the UK or on Twitter @RecoveryGuru.

Recovering from an injury, procedure or stroke isn’t just hard physical work, it’s also hard mental and emotional work. After a hemorrhagic stroke, this is something David Festenstein experienced first hand. People are depressed and discouraged, and it’s easy for them to focus on what they’ve lost. These thoughts can actually affect their road to recovery. But positive thoughts can fuel a better recovery. Studies show it can affect the immune system (e.g. Kohut,  et al. 2002 and Blomkvist et al., 1994) and help people stay more socially engaged (Carver et al. 2003). But in the aftermath of something like a serious stroke, how can we help people get there?

Getting It Down On Paper

Ask patients to keep a diary where they (or if writing isn’t possible, a family member) can record their thoughts and frustrations and what’s happening. But also encourage them to write down anything good that happens or anything they’re grateful for no matter how small. David started by looking around at other stroke patients and realizing that even though his was bad, because he was left-handed and the stroke had affected his right side, he could still write. This reframing gave him a sense of gratitude for what he still had.

David tried to find a few good things each day and wrote them down. After his first shower and shave in the hospital made him feel human again he thought: “if I can have a shower and be clean every day, then i can get through this.”

Over time, the practice of noticing and writing down anything good adds up and help creates a more positive outlook. This also creates a record of progress where people can look back through it and see there is change, maybe change they didn’t notice at the time.

Helping People Find Determination

Also help people write down personal goals that matter to them. For David it wasn’t just to use his hand or walk again, but:
  •   To be able to hug my family with both arms
  •   To walk to the toilet and back
  •   To be able to type again on the PC
  •   To visit my dad in the care home

Writing With Belief and Intention

His physical therapist gave him what seemed like the strange “exercise.” He was to rest his paralyzed hand on a cushion and focus on it while opening and closing his good hand. Even though it wouldn’t feel like anything was happening, it would help his brain re-route its neural pathways. The act of writing through recovery is similar. It may not seem anything is happening, but our brain is processing our path through recovering and learning how to think about recovery.

During those days when he was just staring at his hand and nothing seemed to be happening David would think and also write: “I can do this. I will get there. This will happen.” He noticed as he used this kind of language, he felt it improved his physiology. And after a few days, his fingers just barely began to flicker. But that gave him the inspiration he needed to go two more weeks until he could open and close his hand.

How do you use journals as part of recovery?

Family members also find them helpful - to see that progress and process their role in recovery. Do people ever share insights with staff? Tell us your stories.

Tags: patient engagement, communication, personal healthcare
Posted: Wednesday, July 29, 2015

Engaging Patients Before You Even See Them: Tools to Help Patients Prep for Appointments

Co-author: Peggy Zuckerman, Patient Advocate (featured left) is a Patient Advocate with expertise in kidney cancer issues. She is also on the Board of the Society for Participatory Medicine, a Patient Consultant for Prometheus Labs, and a Patient Reviewer for PCORI and the Dept of Defense. She was part of the SIDM (@ImproveDX) patient panel to develop the Patient Toolkit. @peggyzuckerman

For both patients and providers, appointments often are not all they could be. Ill-prepared and stressed by the problem and the visit, patients may not remember all their symptoms and can forget both their medications and elements of their own medical histories. Doctors are known to interrupt, and can make a diagnosis too soon. Helping patients create a more coherent history and giving them access to any existing lab or test results before they come in can improve the in-person visit.

A new Patient ToolKit from the Society to Improve Diagnosis in Medicine helps patients think through and capture their symptoms and history in advance. It helps them create a medication list and any treatments tried so far. When patients fill this out at home with access to their own records, it’s also likely to be more accurate. The toolkit also gives clinicians insight into patients’ concerns, how they care for themselves and view their problems.  

As part of this, if patients have their labs and can review them before the appointment, they can prepare questions, and with a bit of homework, may understand them. A second appointment to review labs might not even be needed, and may lead to an earlier diagnosis.

Getting down to the details

Other tools can help patients prep for a specific visit, like a chronic pain consult, in a more meaningful way. For example, patients can view a web-based program at home. (Clip courtesy of Emmi Solutions).   

This gives them time to contemplate their personal treatment goals. They may be walked through an exercise to help them recognize what they would do if they had better control over their pain:
  •  Take the kids or grandkids to the park?
  •  Get back to a favorite hobby?
  •  Get through a full day at work?
  •  Or take fewer pills for the pain?
Giving people time and tools to help them hone in on their personal goals provides meaning for the consult and treatment plan beyond: “I would like to have less pain.”

Most importantly, these pre-appointment tools give people time to track and document their pain, and give them insight on how to describe the quality and architecture of their pain. People want to feel better. Most are willing to do a little advance work to make progress; they just need a bit of help knowing where to start and what to do.

Tags: patient engagement, communication, technology
Posted: Tuesday, June 30, 2015

Channeling Your Inner Sherlock Holmes

Lynn Charbonneau
Co-author: Lynn D. Charbonneau, MBA, Director of Patient Experience at Northside Hospital
Making a personal connection to the patient right from the start can engage them and set the tone for their entire experience. But there’s a better way than simply asking a patient, “How are you?” When you step back to think about it, is it any wonder people often reply, “How do you think I am? I’m lying in a hospital bed.”  

How can we ask a more personal question and make a better connection? Look for cues and clues. Are there flowers in the room?  If yes, say, “Who sent you the lovely flowers?” Is there a card on the bedside stand or in the window sill? Who sent it? Is there a photograph in the room?  What are they watching on TV? Noticing anything new can spark a conversation and gives them a chance to talk about the people and things that matter to them.

Next time you return to their room, if there doesn’t seem to be anything new to ask about – is or was there a person at the bedside to ask about? Or if a patient looks concerned: “You seem worried, what’s on your mind?”  

This method of “asking with skilled inquiry” with open-ended questions gives the patient an opportunity tell their story. It’s an invitation to open up.

At Northside Hospital, HCA West Florida Division, every meeting, every huddle is opened with a “Mission Moment.”  This creates an opportunity for everyone to tell these stories, gives everyone a chance to recognize how we feel connected to the patients, and to feel good about the work we do.  This also creates a better experience and more of a connection for the caregivers. It’s easier and more meaningful to care for people we feel connected to.

Recently, I was rounding and saw one of our patients and his wife was sitting on the bed. I walked in and introduced myself, and he asked me “Why is it YOU people always ask the same questions over and over? Don’t you talk to each other?”

I explained we ask the same questions because we want to make sure patients tell us as much about their history as they can. Then I asked, “Who is this lovely lady?” 

A big grin came across his face, and he said, "This is my wife of 46 years.” His perspective shifted from being annoyed to being cared about and having a chance to talk about who matters to him.

Lynn D. Charbonneau, MBA, Director of Patient Experience at Northside Hospital, part of HCA’s West Florida Division.  With 39 years of healthcare experience with 25 years in patient experience improvement, she has a national reputation for her work around coaching and transforming organizational culture. @ldcharbonneau

Tags: patient engagement, communication, rounding
Posted: Thursday, May 28, 2015

From Across the Hospital Bed Boundary

Touch is comforting and reassuring. In some settings it’s been shown to reduce patient anxiety and length of stay.* Yet, a strange thing happens when someone in your family is in a hospital bed. Once there, attached to machines and IV lines, despite wanting to comfort and reassure them, they seem physically out of bounds. It often seems like a hand on their shoulder or holding their hand is the only safe contact.

Despite growing up and spending a lot of time in hospitals rounding with my dad, when he was the one in the hospital I was surprised how awkward it seemed to touch him in any way.

Then, sitting there feeling fairly useless, I watched my sister-in-law (a resident at the time) come in, and with gloved hands, gently rub away the dead, flaking skin on his arms and legs. Then she rubbed his feet. It was probably the best hour of his hospital stay. He may have even forgotten he was there.

Why is it so intimidating for families to touch someone once they’re in that bed? I know I was afraid of the machines, by how delicate and friable his skin was, and by the healing wounds and scabs on his legs. I wasn’t sure what was safe.

Even at the worst moments, families are often afraid to breach the clinical boundary of the hospital bed. In the movie Love Story, Ali MacGraw, lying in bed, terrified of dying, asks Ryan O’Neal to hold her. (For a 70’s flashback, see the clip here.) He awkwardly tries to lean over and hold her from the bedside until she says, “No, really hold me.” So he finally climbs into the bed with her.

The fear of touching patients in bed plays into the fear families often have about taking patients home to care for them. If we proactively spend more time helping family members understand what’s okay, whether it’s knowing if it’s all right to rub a patient’s back or showing them how to care for wounds, we can help build their confidence to care for family members at home. Then it won’t seem like such a sudden shift from sitting by and watching care to being responsible for giving care and literally being more hands on.

And in the hospital, patients and families may feel less like they’re staring at each other across an unspoken borderline.

* MacIntyre, B. et al. Altern Ther Health Med. The efficacy of healing touch in coronary artery bypass surgery recovery: a randomized clinical trial. 2008 Jul-Aug;14(4):24-32. Retrieved May 23, 2015 from: http://www.ncbi.nlm.nih.gov/pubmed/18616066

Tags: family caregiver
Posted: Wednesday, April 29, 2015

Meeting the Patient’s Communication Needs

Co-author: Randi Redmond Oster, author of Questioning Protocol

When Randi Oster’s 15 year-old son Gary was first admitted to the hospital for Crohn’s disease, he was in massive pain. Unfortunately, his regular GI doctor is away at a conference.  The family waited for hours until a physician arrived and did a quick exam and said, “He’s an excellent candidate for surgery.”

The family was stunned. Surgery? No one had ever mentioned this before. To them, this came out of left field. And based on Randi’s past experience with her father, she felt any surgery was fraught with risk and was something to be avoided whenever possible.

Randi had nothing but questions. And their family was not comfortable deferring to the first recommendation. She realized launching into a barrage of questions might put the doctor on the defense.

She decided she first needed to help the new doctor understand their family. She explained that her son is analytical and literal; and that he likes and needs a lot of details and facts.

Randi also explained that while the protocol might be surgery, their family’s process was to gather options, ask a lot of questions, understand the risks and benefits so they can share in the decision and be involved and informed every step of the way.

By being clear up front about the level of information they needed, the physician and medical team were able to meet expectations and provide more detailed and in-depth communication to help find the best option for Gary.

Meeting communication needs: one size does not fit all

Most patients and families won’t proactively jump in to explain what they need or want when it comes their communication style and preferences. Ask patients who they are and what to they want. For some, a lot of details are overwhelming, for others these details help them think through the nuances. And ask how involved would they like to be in decisions?

Research shows that when patients share in the decision making process most (74%) have more realistic expectations.[1] That can make for better decisions and a better patient and family experience.

[1] Source: Impact of Decision Aids The Cochrane Library 2014, Issue 1

Randi Redmond Oster is the award winning author of Questioning Protocol, which helps patients navigate the healthcare system and medical professionals understand the patient perspective. She is also the co-founder and president of Help Me Health, which transforms how healthcare thinks about and delivers patient experience to achieve better outcomes. @helpme_health

Tags: communication, shared decision making
Posted: Monday, March 30, 2015

How to Start a Hard Conversation: Engaging Patients in Advance Directives

Diana Dilger
Co-author: Diana Dilger, Senior Writer, Emmi Solutions

No one likes to bring up death. People like it even less when it’s about them. But that’s not a good reason to avoid it. It’s an important discussion, and we have a responsibility to promote these conversations so patients can have a say in what they do and don’t want.

How do you bring it up?
First, if someone isn’t seriously ill, bringing up advance directives (AD) can seem jarring and out of the blue. It can help to ease into it by saying things like, “Since everything looks good now, this would be a great time to talk about what you might want if you ever do need something and can’t speak for yourself.” Or normalize it: “It looks like you don’t have AD on file. We try to have those for everyone in case you’re ever in an accident; it’s a great safeguard.”

For people who are ill and know something could happen, it might sound more like, “We have your treatment planned for now, but let’s talk about what you may or may not want if treatment doesn’t go the way we hope.”

Then, explain how ADs are a gift to their family. If someone is in an accident or becomes unable to speak for themselves, and there aren’t ADs, it can create a lot of stress, guilt, disagreement, and confusion for their family. So getting it down in writing and alerting everyone to what they want in advance can be a big relief. It's like leaving a guide book for their loved ones.

Address Common Concerns
People are afraid once they create ADs, they’re locked into them. Letting people know they can change them at any time if their wishes change puts people at ease. It also helps to emphasize that putting an AD in place does not mean they’ll get less care. Instead, saying what they do and don’t want helps ensure they’ll get the care they prefer.

National Healthcare Decisions Day
April 16 is dedicated to encouraging people to discuss and document advance directives.
Check out all the events going on for National Healthcare Decisions Day.

Help Everyone Understand
To help educate the public, the multimedia Advance Directives Emmi program will be freely available to the public for two weeks, starting April 16. View it here.

Learn from Experts
A complimentary webinar on with Dr. Ira Byock and Dr. Sheri Kittelson on
Engaging in End of Life Decisions: How to Turn Difficult Conversations into Clinical Opportunities
11 am Central on April 16. Sign up here.

Diana Dilger is a senior writer at Emmi Solutions. She wrote the multimedia Emmi programs on advance care and end-of-life treatment (Advance Directives, Hospice Treatment Options, and Palliative Care). In addition to encouraging others to talk about end-of-life wishes, she boasts a shiny, new set of advance directives for herself. @dianadoesthis

Tags: communication, end of life
Posted: Thursday, February 26, 2015

Engaging Patients in Hourly Rounding: Improving the Patient and the Caregiver Experience

Co-author: Greg Berney, Senior Manager of Patient Experience at Cone Health
Several months ago, a Patient Experience Manager at Cone Health was rounding with a nurse on a med/surg department. We’ll call him “James.” As James discussed different patient experience improvement tactics, he verbalized a concern with hourly rounding logs. “Each time I put my initials on that log I feel frustration with leadership because it feels like they don’t trust me.” Leaders, in turn, felt frustrated because the logs were their only way of ensuring hourly rounding was happening.

While James identified a lack of trust as his main frustration, this also articulates a greater challenge in improving the Patient Experience: ensuring our goals and how we motivate caregivers to meet those goals match. As James would tell you, there is nothing about writing his initials on a log sheet that help him provide better care at the bedside. In fact, the log sheet introduces a new goal and motivation for many caregivers - fill it out faithfully and you won’t be hassled by your boss! Hourly Rounding had become a task for James instead of a tool that to provide better care.

How can we tap into caregivers’ natural motivation, and partner with patients, to improve the patient and caregiver experiences at the same time?

At Cone Health, Hourly Rounding was re-launched with a specific focus on helping caregivers understand what’s in it for them. The entire training is around helping each nurse proactively communicate to their patients in a way that ends up reducing call lights.

The best part: patients who hit their call light less frequently tend to do so because they feel their needs are being met!

Engaging Patients In the Process

Instead of using rounding logs to validate their process, Cone has added a question to the Patient Perception of Care survey specifically asking the patient if a nurse came in the room every hour.  Additionally, some patients give this feedback in real time by keeping their own log sheet of which staff members came in the room and when.  

Patient tracking provides added patient engagement benefits that aren’t available through traditional tracking methods:
  • Patients automatically have a better understanding of the processes, which reduces anxiety or fear about being in pain or being forgotten.
  • This allows patients to more naturally partner with caregivers to ensure their needs are met on a mutually convenient schedule.
  • Staff have additional motivation to explain the purpose and process of rounding.  
One could easily view Hourly Rounding as a transactional task - something that we do to patients. Instead, engaging patients creates a more interactional model in which patients are informed and empowered.  In this way, patient engagement leads to improved caregiver experience as well.  

Greg Berney is the Senior Manager of Patient Experience at Cone Health in Greensboro, NC where he addresses organizational Patient Experience and Patient Engagement opportunities from problem identification through innovation, planning, and execution of improvement initiatives. Greg provides project management and consultation for an organization of 6 inpatient hospitals and 100+ emergency, ambulatory and outpatient areas in close collaboration with senior administrative and physician leadership.  Greg’s recent speaking engagements include the Beryl Institute Patient Experience Conference, Dignity Health’s Patient Experience Summit, and the NextGen Patient Experience Summit. Follow Greg on Twitter at @gregberney.

Tags: patient engagement, communication, rounding, employee engagement
Posted: Friday, January 30, 2015

When Patients Befriend Dr. Google

Co-author: Kerry O’Connell, a construction executive from Denver, CO
For mKerry O'Connellany patients, the Internet becomes their best friend. They spend evenings searching for cures for damaged nerves. When Kerry O’Connell fell off a ladder and destroyed his arm, and when surgeries and treatments failed and made his pain and function even worse, he went, as most of us do, to look for answers online.
When showing this online research to his physician, he was advised to be careful as much of that info was not reliable. Fair warning, but when people are searching for answers and trying to collaborate in their care, they’re often dismissed and made to feel like they overstepped.
Kerry found out he could access medical journals from the med school library. For his next visit he came armed not with flimsy Google search results, but real studies. His doctor was not impressed, saying even studies from last year were out of date and nowhere near the current state of the medical art.

People are searching for a reason

It’s often a sign they feel uneasy and don’t have the answers they need. It’s also an opportunity to find out what those are. In Kerry’s case, he was looking for alternatives to more surgery, drug side effects, better descriptions of typical outcomes, and empathy from others who had gone through the same thing.
Anytime we can provide patient-friendly resources that proactively answer these questions, it can help keep people from going down those online rabbit holes.
But people can also find meaningful information. Sometimes it’s the empathy and support from connecting with others. Other times, people like Dave deBronkart can find out about a medical treatment for his rare cancer by talking to an online patient forum. A treatment his physicians didn’t know about at the time.
As patients and families increasingly turn to online resources, how do you help them find the good ones? And how do you work with them?

Kerry O’Connell is a construction executive from Denver, Colorado, who builds infrastructure by day and lobbies the healthcare industry by night. His favorite causes include infection prevention, medical device training and creating a post-harm standard of care. His articles have appeared in places like Health Affairs, and he regularly provides the patient perspective at conferences like the Summer Institute for Informed Patient Choice.

Tags: patient engagement, doctor's appointment, personal healthcare
Posted: Friday, December 19, 2014

Beyond Sticks and Stones

The old adage ends “…but words will never hurt me.” And most of us agree words may hurt feelings but not cause physical pain. However, we also know the emotional and physical are not completely discrete and separate experiences. We’ve all experienced how language or even a friendly text message can affect our mood and emotions. But more evidence points to language having an impact on at least some physical experiences.
This year, at the International Conference on Communication in Healthcare, a symposium on communication and pain discussed recent research showing that while words, themselves, may not literally hurt people, language, tone, or just avoiding the word “pain” can have an impact.
For example, women recovering from a C-section were either asked: “How are you feeling?” or “Do you have pain?” Did the phrasing of the question change reported pain? It did.
  • When asked “How are you feeling?” only 24% of women reported pain.
  • And when asked, “Do you have pain?” that percentage more than doubled, with 54% reporting pain.
A similar study asking women to rate “pain” vs. “comfort” on a 0-10 point scale also found the women who were explicitly asked about pain had higher pain scores.
As psychometricians and political pollsters know, how we ask questions matters. And that’s not always a bad thing. In this case, asking a more open-ended question may improve the experience or perception of pain.

Tags: communication, pain management
Posted: Thursday, November 20, 2014

Helping People Make Changes Beyond the Exam Room

Co-author: Scott Strange, a 2014 MedicineX ePatient Scholar has been a Type 1 diabetic since 1970. He is especially interested in removing the stigma associated with so many health issues and with mental health in particular. He blogs at Strangely Diabetic and you can find him on Twitter as @strangely_t1.

Many things can affect an individual’s ability or willingness to follow our treatment regimens. Cost, time, life, not believing it’s important, maybe not really understanding, stress, burnout, and depression to name a few.
Having been a Type 1 diabetic for 45 years, I sometimes need more than my annual physical may reveal. And patients in any number of chronic communities do as well. Those extra needs often directly address why I am having so much trouble being ‘compliant’, doing what I am supposed to be doing to maintain my health over the long haul, not just until my next appointment. And honestly, I might spend two or three hours a year with doctors -- leaving me up to my own devices for the other 8758.
But the truth of the matter is that we are rarely asked ‘why?’ and just told to do better, when what we really need is help changing our behavior. Behavior change is hard work, sometimes we’re being asked to stop doing something the way we’ve done it our entire lives. It can be done, but it’s hard to do it alone. We really need the support of our medical team.
Imagine being told to do better, being told that terrible complications will set in if you don’t do better, and then being made to feel guilty because we couldn’t do better. Our medical teams often don’t hear what is going on outside the exam room -- and if they do, they may often feel they can’t do anything about it. I hear too many stories of patients leaving the exam room angry, guilty, teary-eyed and thinking they’re failures.
Now think of that same patient who this time hears: “Here are some things we can work on” or “What can I do to make this easier?” or “How about we try this instead, what do you think?” This inclusive language can help people engage and feel less alone.

Both of you are now looking at the same problem, which is not to see a non-compliant patient or feel like a chronically ill failure.
The real problem is that there are forces at work influencing my behavior that my medical team doesn’t understand. And those forces can be minimized only if those of us on both ends of the stethoscope understand what they are and work together to overcome them.

As a patient I have a responsibility to work toward minimizing those forces. And my medical team has a responsibility to help me accomplish those changes and move beyond the failures.

Tags: patient engagement, shared decision making
Posted: Friday, October 31, 2014

Confronting Health Literacy: Helping Patients Understand

Pain is a huge part of the patient experience. And while we can’t eliminate pain, helping patients understand how to talk about their pain, medications, and multimodal treatment can go a long way to improving what people go through both in the hospital and as they transition to home. This has been one of the themes on the Health Literacy Series. Here are a few of the highlights:
Another challenge is the role health literacy and patient understanding plays in both over- and under-treatment. Helping people understand and share in treatment decisions can be complex. But the more we think about the short and long term effects on quality of life, and the many human and monetary costs of inappropriate utilization, it’s worth finding ways to help patients understand:
For more like this, check out the 2014 Health Literacy Month Series: The Recap.

Tags: patient engagement, shared decision making
Posted: Tuesday, September 30, 2014

Asking Questions, Not Just Giving Information: Shared Decision Making is Relational

Gonzalo BacigalupeGonzalo Bacigalupe is Professor of the Master of Science in Family Therapy Program and the PhD in Counseling Psychology, College of Education & Human Development at the University of Massachusetts Boston. He is President of the American Family Therapy Academy. Bacigalupe is co-principal investigator of a Patient-Centered Outcomes Research Institute Pilot research project: Influence and evidence: Understanding consumer choices in preventive care.

Because the benefits of cancer screening and its usefulness for a wide group of patients are uncertain and the harms may outweigh the potential benefits, doctors and patients need to engage in shared decision making (SDM). And while this sounds straightforward, it’s often challenging.
We’ve both been involved in developing SDM tools to guide breast and prostate cancer screening, Gonzalo with a focus on Latino patients. 
Most SDM research is based on the idea that patients make individual decisions. So the focus has been on understanding how patients acquire and make sense of information that’s often packed with statistical, epidemiological, and probabilistic data. And we ask how well people comprehend it. 
Missing from this equation is how many people operate not just as individuals but also as one person within a net of family and community relationships. Most Latino patients talk through these decisions not just with their close relatives, but also with their extended family and other significant members of their network. Decisions about prevention, diagnosis, and treatment are not just in the working of their individual minds or a cognitive process, but located in the ecology of relationships.
For vulnerable patients, besides having more difficulties at making sense of complex data, the question of how we explore their approach to decision making is central and requires cultural humility.
So what can clinicians do?
Ask about patients' social and cultural context and be curious about how they make sense of healthcare decisions. These questions are an example of how we may capture the rich context and story that may play a pivotal role in how the patient participates in the decision making process.
I know this is a lot of information, if you were to discuss this with a family member or friend, what would be the outcome of the conversation?
What other information do you need to help you make a decision you feel comfortable with?
How would these options affect you and your family’s day-to-day life and their ideas about you?
The epidemiological or probabilistic data, no matter how attentive is to the literacy level of a specific community, will be meaningless if we do not understand who and what plays a significant role in complex healthcare decisions.

Tags: communication, shared decision making, family caregiver
Posted: Wednesday, August 27, 2014

Red Light, Green Light: Helping Patients Weigh the Evidence


Casey Quinlan, who contributed to this post, is a patient advocate, hospital medicine journalist, citizen scientist, 2013 MedX ePatient Scholar, speaker, writer, and healthcare policy wonk dedicated to putting the patient, and the patient's voice, at the center of healthcare.

Patients and families often have to wade through a flood of information about the latest in medical science. And especially when in the hospital, they often need to try to understand the pros and cons of treatments without time for research and while they’re in pain or recovering from a procedure.

Here’s a tool you can use as you partner with them to help them to understand the evidence: TheNNT.com. NNT = Number Needed to Treat.

The site uses stoplight graphics - red, yellow, and green - to show the scientific evidence of the benefit, or lack thereof, of treatments, diagnoses, and risk assessments. There’s also a black label for if the harms outweigh the benefits. The site authors are all practicing emergency medicine or critical care MDs.

For example: Cardiac defibrillation prevents death in 38% of cases where it’s used (green light all the way); Coronary bypass has no effect on 10 year survival post-heart-attack in 96% of cases (yellow light, needs more study); Aspirin to prevent a first heart attack or stroke has no benefit in 99.94% of cases (red light, don’t bother).

This is just one tool that can augment conversations and help patients and families get a better understanding, so they have fewer deer-in-the-headlights moments when facing treatment decisions.

Tags: patient engagement, shared decision making
Posted: Thursday, July 31, 2014

“Be prepared” is more than a catchy boy scout motto, it’s good patient care


Stuart S.W. Grande, who contributed to this post, is a post-doctoral research fellow in shared decision-making at the Dartmouth Center for Health Care Delivery Science, interested in the value of new technologies for enhancing the patient voice (patient engagement).

A surprise party can be exhilarating, but waking up from surgery and finding out you can’t drive for 2 to 6 weeks is not. But that’s what happens to many women who are uninformed about recovering from a scheduled C-section. Other women panic when their belly swells up after an abdominal hysterectomy, something they should know to expect, but sometimes aren’t told about.

Setting expectations about recovery doesn’t just help patients prepare, it reduces their stress. After all, when people know to expect things like pain, they usually tolerate it better. And knowing it’s normal for something to look bruised, oozy, and scary can help reduce late-night panicky calls. More importantly, they have a better sense of when something is wrong and should call.

Patients can also be more activated to participate in their recovery. For example, sometimes, like after orthopedic surgery, patients aren’t told about the potential weight gain that comes from being less mobile. While obvious to clinicians, patients often don’t consider weight gain as a side effect. For many athletes, returning to the field of play is painful and hard with no guarantee. In these situations, gaining a few pounds makes recovery feel much worse.

Of course there’s a lot we can do to help set expectations. Be specific, practical, and honest about what they’re going to see and feel. Is something going to look really bruised and upsetting? While discharge may look like normal healing to a clinician, it can be frightening and challenging for people who aren’t used to seeing it, especially on their own body.

When people know what to expect after a medical intervention they can plan and prepare. Caring for them like it was the first time, your patients will be grateful.

Tags: patient engagement
Posted: Monday, June 23, 2014

Strategies to Help Patients Make Medical Decisions

Medical decisions are daunting. Just walking people through their treatment options can be time-consuming. But how can we help people think about their preferences and life and make a decision that's right for them?

One approach is providing people with videos or written stories (narratives) of what others chose. After all, stories are more engaging and compelling than throwing a lot of numbers and information at people, but do they help people make good decisions? Researchers continue to take a closer look at the effects of narratives, and unfortunately they seem to cause different types of biases and issues. The issue with narratives may be that they are so compelling. (To read more about recent research on patient narratives visit http://engagingthepatient.com/2014/06/25/patient-narratives-shared-medical-decisions/)

Another approach is to help people "try a decision on." For example, instead of simply asking a woman with breast cancer how she feels about breast reconstruction or a prosthetic, ask her to think through different situations, like how she would feel putting on a favorite dress, changing in a locker room, or wearing a bathing suit. This type of thought exercise may help people get a sense of their own narrative without feeling the emotional tug of someone else's story.

Clearly, we need more research to know what we can do to help people apply their preferences to the often complex matrixes of treatment options, side effects, and treatment burdens. What have you tried in your practice to help people integrate their personal preferences into their decisions?

Tags: patient engagement, communication, shared decision making
Posted: Wednesday, May 28, 2014

When Caring for the Family Reduces Patient Stress

What do patients experience as they drift in and out of awareness in an ICU?
Recently, a couple of long-term ICU patients both described how even when they weren’t fully conscious, the mood of the staff as they moved in and out of their room was still apparent to them. They could tell if people were present or smiling, and how even the one-sided conversations staff had with them were meaningful.
One patient also described how he had a very strong sense of his parents’ stress as they kept watch by his bed and how it reduced his stress to hear how the staff was caring for his parents.
It's impossible to always be “up,” but care, hospitality, and mindfulness of close family and friends may reduce patient stress, even when we think they’re not aware. After all, while everyone is worried for the patient, their worry is often for their partner and family.

Tags: patient engagement, communication, family caregiver
Posted: Monday, April 21, 2014

Looking Out for Family Caregivers

A hospital out west recently surveyed people with pancreatic cancer and their family caregivers about their emotional highs and lows over the course of treatment. While the graph of the patients’ emotions looked like a fairly intense rollercoaster ride, the graph of their family caregivers' emotions actually showed higher highs and lower lows.
To understate the obvious, family caregivers take on a lot -- not just the physical care, but the emotional stress. And, as this small survey showed, caregivers may actually experience more hope when things go well and more stress and depression when they don’t.
More and more hospitals have started offering caregiver classes to try to prevent burnout and help prepare people for what lies ahead. Family caregivers often don't realize what they're taking on and how it will affect their social, emotional, and even physical health. At first, it's sometimes hard to see that it can quickly become a challenge just to leave the house for a few hours to run errands or get a good night's sleep, let alone deal with any mood swings or memory or dementia issues.

These types of caregiver classes can also serve as social support and a way for them to meet others to talk with. What is your hospital doing to help prepare family caregivers so they don't end up a casualty of caregiving?

Tags: family caregiver
Posted: Tuesday, March 25, 2014

Inviting People to Share in Decisions

Last month’s tip examined The Case of the Unfilled RX and involving people in any decisions to start a new medication. And while research shows most people want to be involved in shared decision making (SDM), they may not feel comfortable entering into this new dynamic with a clinician. After all, they may be embarrassed to voice concerns – like if they’re afraid of needles or injections.

And there are people who say they don’t want to participate in SDM. But we also know there’s no way to predict who is and isn’t interested. So the most important thing to do is ask. Even if they aren't up for SDM, everyone needs to be invited. We need to initiate it. And it may take some coaxing to get people to open up about what matters to them. After all, aren’t they supposed to be a good patient and do whatever the doctor says?

That said, I think there’s a way to invite people and help engage even those who are reticent. Try something like this:

“There’s no one perfect treatment for your condition. And there are pros and cons to all of them. So, I can tell you about the options, but I need your help to figure out which treatment is best for you. After all, whatever we choose needs to meet your goals and fit into your life and schedule, or it’s not the best option for you.”

When put this way, I think most people understand they are the ones who have the other half of the information needed to make “the right” decision.

To learn more about SDM, a free PDF of an introductory article is available here.

Tags: patient engagement, shared decision making
Posted: Monday, February 24, 2014

The Case of the Unfilled Rx

With medical ads on TV some people go to doctor's asking for a medication they’re sure will cure what ails them. But more often, when a new medication is being prescribed, people are dubious. And they’re not likely to express it aloud. Do they really need it? Maybe their uncle took statins and now has leg pain – a valid point informed by real-life experience. Other times people may feel stigmatized if they need to take a second medication for something like diabetes, and if it’s an injectable, fear of needles is enough for many people to silently decide “no.”

So many reasons to avoid taking a drug, and yet we often assume people are simply non-adherent. But maybe we never made sure they agreed to take it in the first place.

People definitely need to understand what the medication is for and why their doctor thinks they should take it. But if we don’t ask patients about their goals and preferences, we can’t know if they do or don’t want it, or if another medication or treatment might be a better option for their lifestyle. But there’s no way to know without asking. We can’t expect people to feel comfortable volunteering this information. And without inviting patients to share their concerns and preferences, they may just nod, politely put the prescription in their bag, and walk right past the pharmacy.

Tags: patient engagement, communication
Posted: Monday, January 27, 2014

Helping Patients Understand the Big Picture

When it comes to the big picture of a health condition and how it may affect people’s bodies and lives over time, it’s easy to take what we understand for granted and assume patients and families know, too.

I was recently struck by this while working on a decision aid for End Stage Renal Disease. When we tell people who are newly diagnosed or living with diabetes that over time it can cause kidney problems, do they really understand they may be on a trajectory toward renal disease, dialysis and kidney failure? Or do we simply say it can cause “serious problems” and take for granted they know what lies ahead? I think it takes a lot of people by surprise – and it’s not a nice one. In fact, we often begin our interviews of patients who are starting treatments like dialysis with what they wish they’d known.

A local nephrologist told me that as many as 30% of their first-time appointments never show up, because people with diabetes have no idea why they’ve been referred. We heard this from patients themselves in our Crohn’s Disease focus groups. We were concerned all the information about ulcers and anal fistulas was too scary and overwhelming. But what we heard is: this is the real information I wish I’d understood when I was first diagnosed.

Now, I’m not talking about “scaring people into being good patients,” or getting into all of this when someone is first diagnosed. Overwhelming people is not helpful. But making sure they understand enough about their condition and how it may progress can feed into why they’re being asked to do so much day-to day care. And it can help their family engage in their care, too.  

Tags: patient engagement, communication, health literacy
Posted: Monday, December 23, 2013

Baby Steppin'

Baby steps, goal setting, action planning … you may have heard of one or all of them. So instead of giving people an overwhelming list of all the changes they should make to their diet, lifestyle, and activity, this is a great way to help people make changes by taking baby steps. Give it a try.

Start by letting the patient make the decision about making one small, achievable goal they feel they can do that week. After all, when we are empowered to choose what we want to change and how, we’re a lot more likely to do it versus being told.

Then be prepared for pretty much any answer. If someone says they want to work on getting more exercise, ask exactly what they’d like to do first. Doctors have heard everything from: I need to clean my living room this week so I have a place to exercise, to I’ll walk 3 blocks, to I’ll do 100 push-ups everyday.

But how confident are they that they can almost certainly do it that week? Ask “on a scale of one to 10, how sure are you that you’ll be able to do this?"

Generally if people say anything less than seven, they need to set a more attainable goal or problem solve what they can do to improve their confidence so it’s in the high zone. Then follow up in one week to find out what they did.

Instead of being overwhelmed by everything they could do, people make a small change and gain confidence that they can change. And they’re usually encouraged and build on that success.

Like anything new, even something as simple as helping a patient set their first goal can be awkward. But like any procedure you’ve learned, it gets easier. And clinicians find they can do it in as little as two minutes.

If you want to learn more, people like Dr. Kate Lorig and Dr. Hilary Seligman have done great work on this: http://www.healthliteracy.com/article.asp?PageID=6111 & http://www.jabfm.org/content/19/3/324.long.


Tags: patient engagement, communication, shared decision making
Posted: Wednesday, November 20, 2013

Don't Forget "The Why"

I don’t know about you, but I don’t tend to blindly do things just because someone tells me to. Yet we expect patients to do this all the time -- and when they don’t we brand them “non-adherent.” We all have that inner 3-year old that just wants to know “why.” But more than curiosity, we need to make sense of the information.

And when we don’t give people “the why,” or assume they already know why, they will fill in the blank on their own. Take this real example: a bariatric patient is told not to eat or drink 8 hours before his surgery. No reason. Just do it. He shows up having had breakfast. When asked why he didn’t follow instructions, he says “Oh, I thought my doctor just wanted me to start dieting.”

This person is not stupid, he was just trying to make sense of seemingly meaningless orders. A story closer to home: a friend of mine didn’t heed instructions not to smoke in the days after oral surgery. Only after a dry socket developed did the oral surgeon explain that smoking both affects healing and that any kind of sucking action, including cigarettes, and not just through straws, can dislodge the blood clot. Once back home and in pain she said, “Well, if I had known that, I wouldn’t have smoked.”

Tags: communication
Posted: Wednesday, October 23, 2013

Talk About Myths

Big foot and the Loch Ness Monster aside, there are lots of myths and half-truths floating around healthcare. After all, if you’re breastfeeding there’s no possible way you can get pregnant, right?

Of course, you can wait to see if patients ask you about things like this, but chances are they may not realize something’s a myth, or a partial myth, especially when many things sound like common sense. Why would anyone doubt if bed rest is a good idea for low back pain? It certainly sounds right.

Plus, real experiences can reinforce myths. Many people still think the flu shot will give them the flu because they didn’t feel great the next day. They probably didn’t actually have the flu, but it still might mean they’ll avoid getting vaccinated for the next few years.

With something like breastfeeding it can just mean validating that it may play a role in preventing pregnancy, but it doesn’t guarantee a woman won’t get pregnant. For something like low back pain, it may be more challenging to help people understand that even though walking may hurt, that blood flow is important for their back to heal.

But proactively talking about common myths, and talking about them respectfully, can make all the difference in patient understanding.

Tags: patient engagement, communication
Posted: Friday, September 20, 2013

Be Psychic

That’s right, when telling people about a procedure or a new diagnosis, it helps to be a little bit psychic. To be fair, you don’t actually have to be psychic, so much as seem psychic.

You probably already know the questions, fears and worries patients have around certain procedures or diagnoses: When is it okay to have sex again? Will my scar be noticeable? When can I drive again?

These questions weigh on people’s minds. And it may even be hard for them to concentrate on anything else you say until they get an answer. Sometimes they feel embarrassed to ask because they have a question about something like ED or depression medication, other times they’re embarrassed that what they’re worried about is something cosmetic, like a scar. Or it’s the real day-to-day concerns about being able to care for their family.

So, if they don’t bring it up themselves, normalize those questions with a simple "now with this procedure, a lot of people ask…" It’s amazing the relief they feel to know they’re not the only ones with this question and that they didn’t have to be the one to bring it up.

Tags: patient engagement, communication, doctor's appointment