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Patient Engagement Tip of the Month

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


Showing all Blog Posts with tag: engagement View All Blog Posts
Posted: Monday, May 06, 2019

Slow Medicine

By Geri Lynn Baumblatt
When partnering with people as they make health decisions, it’s easy forget what it’s like not to know. Yet, even when people have lived with a condition for years, there can be meaningful gaps in their knowledge and understanding.


 
One study that resonates with my own experience found that 92% of patients with ESRD thought their health would remain stable or improve over the next 6 months.1 I found the same when talking to people with stage 3 kidney disease; most of them were sure diet was enough to protect their kidneys and they didn’t realize they were coming up on difficult decisions about dialysis and transplant even if they’d been good about their diet.
 
This presumed understanding has a big impact on care decisions and future planning. After all, if you don’t think you have a life-limiting illness, you’re probably less likely to prioritize advance care planning. With kidney disease, this unfortunately plays out as “a minority of dialysis patients use hospice.”2
 
Other patients and families I’ve talked or worked with:
  • Thought heart failure was an acute condition they’d get over and recover from
  • That if they didn’t currently experience symptoms from Crohn’s disease that meant their condition wasn’t progressing or causing any damage to their colon
  • Thought imaging findings of herniated discs meant that disc issues were definitely the cause of their back pain
For people to make truly informed decisions, before discussing treatment options, make sure patients and families have a solid understanding of their condition and prognosis. Even if it’s a review, there can be essential information people heard years ago and forgot — or it wasn’t presented clearly — or they were stressed during that encounter. 
 
If there is meaningful new information, it may pack an emotional punch. Slowing things down so people have time to process their emotions as well as the understanding can be hard. After all, decisions are hard, and it can feel easier and less painful to just put a plan in place. And clinicians have emotions, too — so the impulse is often to jump in and alleviate the stress of working through to a truly person-centered decision.
 
So, before walking through treatment options or pathways, ask people and their care partner to describe their condition and what it means for them over the near and long term. 
 
This can also help us all get a better understanding of common gaps and misconceptions so we can anticipate them and normalize them for people earlier and not just at the point of decisions.
 
If you uncover a meaningful gap in knowledge or misconception, slow things down. People may be anxious and make a quick decision, or they feel overwhelmed and defer.  Giving them time to process the information and emotions still puts them in a better place to make a thoughtful decision.
 
1Manda K, et al “Do ESRD patients really want to know prognosis?” NKF 2013; Abstract 146.
2Murray, Anne M. et al. Use of Hospice in the United States Dialysis Population. CJASN November 2006 vol. 1 no. 6 1248-1255

 
Baumblatt1.jpg

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, engagement, listening, patient
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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
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Posted: Wednesday, January 02, 2019

Behind Worry Lines: Anticipating Patient Concerns

By Geri Lynn Baumblatt MA
“Will a colonoscopy hurt if I have a hemorrhoid?”
 
“Will a hip replacement make it possible for me to have sex again without pain?”
 
“What happens to the space where my uterus was?”
After reading a brief description of how organs in the body shift to fill in the space, the woman (who had a hysterectomy many months ago) was thrilled. “No one explained that to me.” she said. “And it’s really been bothering me. This puts my mind at ease.”

BehindWorry.jpg

As much as we encourage people to prepare questions, they know there’s limited time. And they feel like questions about things like scars will come off as vain, or they’re embarrassed to ask questions about things like bowel movements or sex. Sometimes just knowing the answer is reassuring. Other times, issues like hip pain during sex is one of their main reasons for having a procedure. In fact, most people want more info about sex after hip replacement.
 
Even confident people who interview scientists for a living don’t feel comfortable asking questions when they’re in the patient’s seat. On an episode of the podcast Hidden Brain, Alan Alda describes being flummoxed and afraid to ask questions about oral surgery he’s about to have. It ends up affecting his smile, something he wished he’d understood as an actor.
 
While we can’t anticipate all questions, we can anticipate many of them. And this does a few things:
  • It normalizes asking uncomfortable questions. If you bring up questions about sex, hemorrhoids, or scars, people realize these must be common questions others have. It puts them at ease, and they feel more comfortable asking other questions.
  • It lets them know you care about them and their concerns. They’re often incredibly grateful. It builds the relationship and can foster more intimacy.
  • It can make the conversation more efficient – people don’t spend time dancing around their questions, building up courage, and figuring out how to broach a topic.
  • It builds trust. When people see their caregivers get it and know what concerns them, they’re more likely to trust other information.  
  • When you answer questions up front, they not hanging over people. So this can make it easier for them to focus on the rest of the conversation.
How do you learn about and capture patient and family concerns?
If you haven’t done this already, try it, see what you learn, and then notice how integrating it into conversations changes them.


Baumblatt1.jpg
Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

 
 

Tags: communication, patient education, expectations, engagement, patient
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Posted: Thursday, November 01, 2018

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

By Geri Lynn Baumblatt & Michelle Van De Graaff, RN, BSN

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

Michelle in the Republic of Kiribati

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



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

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


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

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

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

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

Tags: communication, family caregiver, engagement, experience
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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
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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
1 comments
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
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
0 comments
Posted: Tuesday, August 22, 2017

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

By Geri Lynn Baumblatt and Victoria Baskett
Victoria Baskett
Victoria Baskett

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

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



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

Tags: communication, personal healthcare, shared decision making, empathy, engagement, experience, listening, patient
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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
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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_007.jpg 
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.
 
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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
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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
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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
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