AboutEventsBecome A MemberResourcesGet InvolvedNewsletter Unsubscribe


This login popup box will appear when a user tries to access content that is for members only. If you are not a member yet, please register for a membership. We’d love to have you be part of our community.

  • Basic/free members will have access to a limited amount of site content.
  • Premium/paid members will have access to all site content.

All users will have to be logged in to access the content. Become a member and gain access to exclusive features.


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

Showing all Blog Posts with tag: patient engagement View All Blog Posts
Posted: Monday, March 04, 2019

More Than a Nuisance: Addressing Post-op Depression as an Essential Part of Recovery & Participation

By Geri Lynn Baumblatt
Recently, a friend had a minor surgery. Once he was safely home, he was surprised that he burst into tears. This was transient, but that’s not always the case. 
Over the past year as I’ve talked with people about a variety of procedures, and one story repeated: even when people were looking forward to something like a joint replacement so they could be more active again, they were often confounded to find themselves depressed in the days, weeks, and even months after surgery. As one woman told me, “I was relieved to finally have a hysterectomy to stop my bleeding. I definitely didn’t want to have more kids. But afterward, I was seriously depressed, and even had suicidal thoughts. I couldn’t understand why. But I felt like I was going crazy.” 

We know it’s normal for people to feel anxious before surgery, but do we help them understand that some people experience depression afterward? 
People expect pain and other challenges during recovery, but for those who also experience depression, not knowing this can happen creates confusion, embarrassment, and isolation.
Depression has been documented after many procedures coronary artery bypass graft, joint replacement, bariatric surgery, colon surgery. While it may be more common after certain procedures, there’s a risk with any surgery. And getting comfortable with identifying and addressing it can only improve patient experiences, engagement and outcomes.
Many factors may contribute: the body has been through a trauma (even if a planned trauma), effects of anesthesia, a post-op let-down effect, opioids, poor sleep, and depression or anxiety before surgery.
Unfortunately, not knowing it occurs makes it less likely people will reach out for help when they experience it. And:
  • This makes it much harder for them to participate in their recovery and rehab.
  • It lowers their threshold for pain, and can create a pain-depression feedback loop.
  • It increases morbidity and mortality.[1, 2]
Get out ahead of and behind it:
  • Studies recommend screening everyone for depression before procedures. This could also be used as an opportunity to both broach the topic with people and normalize it. [3]
  • Educate patients and family caregivers about post-op depression so they can recognize it, report it, and put it in perspective.
  • Help people understand what happens during surgery and set realistic expectations about recovery. Knowing what to expect reduces anxiety and gives people a sense of control. And less anxiety before surgery may mean less afterward.
  • Screen for depression during follow-up visits and calls. 
People can only participate in their care when they have energy; unfortunately, depression robs them of this. And including it as part of patient and family education can help people identify it, destigmatize it, and address it.  

Catch up with Geri this Spring at:

1. Guerini F, Morghen S, Lucchi E, Bellelli G, Trabucchi M. Depressive symptoms and one year mortality among elderly patients discharged from a rehabilitation ward after orthopaedic surgery of the lower limbs. Behav Neurol. 2010;23:117–21. doi: 10.1155/2010/365341. [PMC free article][PubMed] 
2. Thombs BD, de Jonge P, Coyne JC, Whooley MA, Frasure-Smith N, Mitchell AJ, et al. Depression screening and patient outcomes in cardiovascular care: a systematic review. JAMA. 2008;300:2161–71. doi: 10.1001/jama.2008.667. 
3. Ghoneim, M. M., & O'Hara, M. W. (2016). Depression and postoperative complications: an overview. BMC surgery16, 5. doi:10.1186/s12893-016-0120-y 

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, patient
Posted: Friday, February 01, 2019

Extending Time With Patients: No Time Travel Needed

By by Geri Lynn Baumblatt and Hannah Herrington
Hannah’s Story
At age 12, I was diagnosed with a chronic condition, and with a second one 11 years later. I’m not unique. According to a 2017 RAND study, 60% of Americans had at least one chronic condition, and 42% had multiple. With decades of patient experience under my belt, I recently had a bump in my health journey. My medications stopped working and I developed new symptoms. I’ve had flares in the past, including 5 surgeries, but this time was different. Now I work full time, I’m married, and mom to a toddler. Flaring this time meant missing work, hospitalization, weekly appointments, guilt and depression.
What struck me most was how there wasn’t time to discuss these life stressors with my doctors. It was important for them to know how my life was being impacted, and how my life may be impacting my illnesses. It was also important that my multiple specialists understood each others’ recommendations and treatment plans - and that I get connected with resources.
While clinicians want to be collaborative,15 minutes makes it difficult. People need to feel they trust their clinician, but they often need resources beyond the encounter, too.
Help patients prepare for their visit.
Be specific! Beyond current symptoms and medications, help patients prioritize questions or concerns that may be outside the traditional conversation about their illness. For example, could your office send a few questions for people to fill out in advance? These could be personal, life-related questions that can be uncomfortable to bring up or answer off the cuff when face to face. How is your health affecting your work? ...hobbies? ...relationships? And vice versa? This way, you can hone in on important topics that can really impact their life, wellbeing, and their ability to follow a new treatment plan.
Then, extend your time and reach.
Most people can benefit from resources or community health connections. But this takes time and often some research.

This is when you can lean on health educators and health education specialists. Separate from RNs and clinical staff, who have set duties in a practice, health educators are trained to focus on how people can best understand what’s needed to care for their condition(s), incorporating learning theories and health literacy best practices. With backgrounds in public health and education, they can help bridge the gap by providing what you’d like to be able to give to your patients (resources and a confirmed understanding of conditions and care).
  • In a health system, ask about the availability of health educators to support you.
  • In a private practice, when thinking about new roles, consider a health educator or those with a public health background when creating job descriptions.
We’re all working towards more positive provider-patient relationships. It’s challenging, for both sides, to keep a firm grip on all the details while still trying to stay hopeful. Continuing to work together and continuing to better understand each other's perspectives will help create a path to get us there.

Hannah Herrington has a Master in Public Health, concentrating in Behavioral Science and Education. She is Certified in Public Health and is a Certified Health Education Specialist. As a patient, advocate, and educator, she is working to empower patients and HCPs to work together to successfully navigate the complexities of chronic conditions. hmartin623@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

Tags: patient engagement, communication, doctor's appointment, engagement, experience
Posted: Monday, December 03, 2018

Do we have a heard mentality?

By By Geri Lynn Baumblatt & Chris Heddon

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: Monday, October 01, 2018

Getting Engagement Right: Start with the Patient Perspective

By Gregory Makoul & Geri Lynn Baumblatt

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 By Geri Baumblatt, Dr. Michael Bennick & Steven Koppel

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

By Geri Lynn Baumblatt, MA
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

By By Dhruv Vasishtha and Geri Lynn Baumblatt


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: Wednesday, April 04, 2018

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

By Geri Lynn Baumblatt

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, February 13, 2018

Connecting the Social Dots

By Geri Lynn Baumblatt & Diana Deibel

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.

By By Geri Lynn Baumblatt & Shai Levi


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: Thursday, July 13, 2017

Engaging Patients, Families & Staff with a Promise

By By Geri Lynn Baumblatt & Julie Becker

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: Tuesday, May 09, 2017

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

By Amy Bucher is the Behavior Change Design Director at Mad*Pow in Boston. Amy focuses on crafting engaging and motivating solutions that help people change behavior, especially related to health, wellness, learning, and financial well-being. Previously she worked with CVS Health as a Senior Strategist for their Digital Specialty Pharmacy, and with Johnson & Johnson Health and Wellness Solutions Group as Associate Director of Behavior Science. @amybphd
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

By By Geri Lynn Baumblatt & Liz Salmi

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 Frieda Wiley, PharmD, BCGP, RPh, is a board-certified, geriatric pharmacist and medical writer whose healthcare experience includes the pharmaceutical industry, community pharmacy, and managed care consulting. She has served on the editorial board for the American Association of Consultant Pharmacists, as Chair and Co-Chair of the American Pharmacists Association’s Medication Management Special Interest Group for Telehealth, and is a member of the University of Texas at Houston Consortium of Aging Committee. @Frieda_Wiley

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: 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: 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: 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, 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: Thursday, November 20, 2014

Helping People Make Changes Beyond the Exam Room

By Scott Strange
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: Wednesday, August 27, 2014

Red Light, Green Light: Helping Patients Weigh the Evidence

By by Geri Lynn Baumblatt, MA, & Casey Quinlan

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

By by Geri Lynn Baumblatt, MA & Stuart S.W. Grande, PhD

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

By Geri Lynn Baumblatt, M.A., Editorial Director at Emmi Solutions
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

By Geri Lynn Baumblatt, M.A., Editorial Director at Emmi Solutions
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: Tuesday, March 25, 2014

Inviting People to Share in Decisions

By Geri Lynn Baumblatt, M.A., Editorial Director at Emmi Solutions
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

By Geri Lynn Baumblatt, M.A., Editorial Director at Emmi Solutions
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'

By Geri Lynn Baumblatt, M.A., Editorial Director at Emmi Solutions
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, October 23, 2013

Talk About Myths

By Geri Lynn Baumblatt, M.A., Editorial Director at Emmi Solutions
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

By That’s right, when telling people about a procedure or a new diagnosis, it helps to be a little bit 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