Patient Engagement Tip of the Month

When Susan Shelton’s 99-year old father Chet was in the hospital, he received care that was tailored specifically to his needs as an older adult. Chet is hard of hearing and needed staff to look directly at him when they spoke to him. He also needed to use the closed captions feature on his television. And when her father had an episode of delirium, nurses contacted Susan. She was able to talk to him on the phone, calm him down, and then stay the night with him at the hospital. 
 
Susan saw how impactful this was, and she wanted to bring that model into the community. She and her coworkers at the Anne Arundel County Department of Aging and Disabilities developed MY STORY: a free tool to collect information about the needs and preferences of an older patient or resident in a simple format that can be sent with them when they’re admitted to the hospital or sent for a rehab visit. Staff find this is very helpful, and crucial for learning about people with dementia.

The front of MY STORY has space for 2 photos. One photo is often of the adult with their family or a few of their favorite things. If the adult has dementia, the second photo can be of them as a younger adult, which they may identify with better. 
 
The back of MY STORY gives a snapshot of each individual’s baseline ability to perform activities of daily living. Staff can easily learn how people functioned before they were in the hospital or rehab facility.
 
The information at the top tells staff what really matters to the person so they can provide personalized care, engage people in topics that matter to them, know what makes them happy, calm, or helps them sleep. 

The Impact of Knowing
A MY STORY pilot program was conducted at 14 small (4 to 16 bed) community-based assisted living facilities in Anne Arundel, Howard, and Baltimore counties. The program was well received by clinicians and other caregivers. 
 
How did it help? They loved knowing what was important to each resident to create meaningful relationships and how to care for them beyond their physical needs. For example:

• Mary, a resident with dementia, became anxious and agitated as evening approached. Because of MY STORY, staff knew she’d be more comfortable if she had a cookie, a glass of milk, and an opportunity to sit with staff in a quiet area. 
• They learned George’s arthritic pain intensified if he was cold. Staff used warm blankets to make him more comfortable and this greatly improved his quality of life.

The initial goal of the pilot program was to expand the use of the MY STORY to reach 900 community members. The program has already reached about 1,300 older adults residing in assisted living facilities, nursing homes, hospice care facilities, and private homes of those still living independently in the community. On at least 2 occasions it reduced the use of physical restraints on patients with dementia.
 
And benefits are reaped on all sides. Consider a couple other examples: 

• Judy hated to take her daily walk to get exercise. From MY STORY, the staff learned she loved music and dancing. So instead of trying to make her take a walk, they played lively music, and she happily danced with them instead of resisting a walk.
• Bill was very quiet and isolated himself in his room. But he enjoyed sports on TV. Staff discovered they could sit with him and watch part of a game and interact with him one on one. This reduced his social isolation and allowed him to enjoy sports while connecting with others.

Families are able to quickly tell their family member’s story and see them treated as a whole person. Staff can better understand patients’ needs and quickly gain insights on how to be effective, and they can develop a relationship, even when caring for those with dementia.
 
On the MY STORY link you can play the video which demonstrates that the needs and preferences of older adults are what really matters.
 

Susan Shelton is the Director of the Assisted Living Program for the Anne Arundel County Department of Aging and Disabilities. She has a Masters in Adulthood and Aging and over 30 years of experience working to improve the care older adults receive in any setting. She believes that what matters to older adults should matter to everyone who cares for them. Visit MY STORY: https://www.aacounty.org/services-and-programs/my-story

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
 

People often leave the clinician’s office without asking any questions. Some people think it’s not their place to ask questions, that the doctor would be insulted or doesn’t have time to answer them. Others go blank when a clinician asks, “Do you have any questions?” – only to think of many later on.

As one patient, Bill Lee, explained: “Some patients are reluctant to ask questions. I used to be like that myself. A doctor would tell me something and I’d say, ‘Okay, thanks.’”

After 7 heart attacks, Lee found a new doctor and started asking questions. Before he saw a doctor, he would make a list of his questions.

        “When I ask questions, I’m more likely to follow through with the advice from the doctor.”

Despite his history of heart attacks and diabetes, Lee said he felt better than he ever had. “If I hadn’t started to ask my doctors questions, I honestly think I would be dead today.”

Research confirms people are more likely to get accurate diagnoses and have better outcomes when they ask questions and communicate clearly with their healthcare team.

Inviting people to ask questions
Making people feel okay about asking questions is easier said than done. Patients and families can find clinicians intimidating even when they’re friendly. Coming from different cultural backgrounds and speaking different languages can also inhibit question asking. Furthermore, people may worry that their clinician will think they’re stupid if they ask questions.

Beyond asking people if they have questions, how do we invite and encourage them to ask?
One resource is in the AHRQ Health Literacy Universal Precautions Toolkit; it is called Encourage Questions. It suggests clinicians should invite questions verbally and with body language and involve office staff in encouraging questions as well.

Another strategy is to help people organize questions and other information ahead of time. AHRQ’s Question Builder helps people create a list of questions to take with them. And now a free Question Builder mobile app is available on the App Store and Google Play. The app lets people save their questions in an email or as a calendar appointment that allows for note taking during medical visits.

The app also integrates with a smartphone’s camera. People can snap a photo of important visual information such as an insurance card, a pill bottle, or a skin rash.

The app helps people formulate good questions.
It suggests key questions relevant to the type of appointment or issue they wish to discuss:

• Health problems
• Getting or changing a medication
• A medical test
• An upcoming procedure or surgery

For example, a suggested question many people may not think to ask or feel uncomfortable asking is:

        What will happen if I choose to not have treatment?

These suggested questions help normalize questions people may be afraid to ask. Seeing a question as part of a standardized list helps them know it’s okay to ask this question.

The app also helps people prepare to answer common questions their clinician may have for them based on the reason for their visit.

Mobile apps won’t solve the complex challenges of healthcare, but AHRQ’s Question Builder app is a free and simple way to help people overcome their hesitancy to ask questions and participate in their care.



Cindy Brach is a Senior Health Care Researcher at the U.S. Agency for Healthcare Research and Quality (AHRQ). She’s is the Co-Chair of the Department of Health and Human Services Health Literacy Workgroup.

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
 

• Medication - Can you read the medication label? Remember how to take your medication? Do you have the hand dexterity to open the container? How about numeracy and health literacy skills to understand the instructions?
• Memory - Can you successfully sequence self-care steps? Do you need a list or visual cues?
• Mobility - Can you sit or stand safely; get in and out of a tub?

1. Train family caregivers. This is definitely underutilized and can start during the hospital stay. Caregivers need a better understanding of their loved one’s health condition, as well as skills training.
2. Determine if patients can safely live independently, or if they need rehab or nursing care.
3. Address existing disabilities with assistive devices.
4. Perform home safety assessments before discharge and suggest modifications.
5. Assess cognition and the ability to physically manipulate things like medication containers. Provide training when necessary.
6. Work with physical therapists to increase the intensity of in-patient rehab.

1. Centers for Medicare and Medicaid Services. (2012b). Report to Congress: Post Acute Care Payment Reform Demonstration (PAC–PRD).Washington, DC: U.S. Department of Health and Human Services. Retrieved from http://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/Reports/downloads/Flood_PACPRD_RTC_CMS_Report_Jan_2012.pdf
    
2. A. T. Rogers, G. Bai, R. A. Lavin, G. F. Anderson. Higher Hospital Spending on Occupational Therapy Is Associated With Lower Readmission Rates. Medical Care Research and Review, 2016; DOI: 10.1177/1077558716666981

• 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

• 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]

• 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. 

Catch up with Geri this Spring at:

• Aging in America, April 15-17: engaging family caregivers in care transitions
• The PX Conference, April 3-5
• IHA Health Literacy Conference, May 1-3: capturing patient insights using the think-aloud protocol

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 surgery, 16, 5. doi:10.1186/s12893-016-0120-y 

• 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.

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

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
 


 

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. 

• 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
 

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?
 
Challenges
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

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. 

• 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?

• Pain or discomfort?
• Time lost at work?
• And a colonoscopy is an embarrassing ordeal, right?

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.

3. 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

• Listening
• Showing compassion
• Complete/consistent/understandable communication
• Showing respect

• Provide greeting and introduction
• Confirm understanding
• Identify and discuss patient and family preferences

• 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.

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.  >>>

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. >>>

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.  >>>

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?   >>>

Co-author: Allison Massari

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. >>>

October Health Literacy Month Blog Series

• 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

Engaging Patients & Families in Conversations about Aging & Driving

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.

1. Your clinical peers

2. Best practices

3. 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.

Co-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.

Getting It Down On Paper

Helping People Find Determination

•   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

How do you use journals as part of recovery?

Getting down to the details

•  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?

Co-author: Lynn D. Charbonneau, MBA, Director of Patient Experience at Northside Hospital

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

Co-author: Greg Berney, Senior Manager of Patient Experience at Cone Health

• 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.  

Co-author: Kerry O’Connell, a construction executive from Denver, CO

People are searching for a reason

• Patient Kerry O’Connell’s article: Relatively Painful
• Amy Bucher’s piece: Communicating About Pain
• Diana Dilger explains: My Pain Is Always Going to be a 10

• Dr. Corey Siegel’s article: If Goldilocks Had a Thermometer
• Angie Newman asks: Are We Abusing Dialysis?
• Gary Schwitzer on The Role Media Messages Play in Overdiagnosis & Overtreatment

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.