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

Clinicians and professional caregivers aren’t used to being on the receiving end of care -- and typically don’t like the vulnerability that comes with being a patient. Instead they’re often taught to be tough. They work long hours, eat on the go, and balance life and death decisions - in order to deliver care to others. In other words, the culture of medicine is to not care for yourself in as you work to care for others. It’s a zero-sum game. Every minute spent getting rest, eating well, enjoying a hobby, or exercising is a minute that’s not spent doing patient care.
 
What if it’s not a zero-sum game?
There's ample evidence that how doctors look, feel and behave may affect patient care. Studies show that many doctors and nurses fail to promote healthy behaviors in their patients, particularly if they themselves aren’t eating well, getting exercise and are stressed. And who isn’t stressed?
 
The converse is also true:
Clinicians who are healthier are more likely to talk with their patients about lifestyle choices and patients in turn may feel more comfortable receiving and following their advice.
 
So much of health care spending and disease burden is tied to behaviors: smoking, diet, activity, and stress. And if the ones who provide care can't make changes in their own lives, can we expect patients to make those changes?
 
A Johns Hopkins study found that normal weight doctors are more likely to counsel their patients about obesity and weight loss than physicians who are overweight. Today, roughly 6 in 10 doctors and nurses are overweight or obese, a level approaching that in the general population. That’s not great news, but it’s also an opportunity.
 
Consider the dramatic decline in smoking rates over the past 50 years. Clinician behavior helped lead the way. In the 1950s about half of physicians smoked. By the 1980s the rate was below 20%. Today its down around 3%. In the culture of healthcare, being a smoker became unacceptable, and the clinicians who quit smoking themselves knew what it took to quit and could help patients get over the hump.
So even though doctors may make lousy patients, embracing that experience might be exactly what they have to do to help their patients get over their own hurdles, vulnerabilities, and fears.
In the words of Nobel Peace Prize-winning physician Albert Schweitzer: "Example is not the main thing in influencing others. It is the only thing."
 


Make a promise to yourself and those you care for.
If this resonates with you, read more about The Patient Promise. Commit to your own health and creating the best version of yourself, so you can help others do the same.  

Here is a youtube video link that nicely complements this article: https://www.youtube.com/watch?v=3fS3CCZwrc0

 
Shiv Gaglani began his MD degree at Johns Hopkins and paused to earn his MBA from Harvard in 2016. He co-developed the Patient Promise, a movement to improve the clinician-patient relationship through partnership in pursuing healthy lifestyle behaviors, and curated the Smartphone Physical, which debuted at TEDMED. He is also the co-founder and CEO of Osmosis.org, a health education platform that reaches over a million current & future clinicians, as well as their patients. @ShivGaglani @OsmosisMed



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
 

• 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 

• 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.

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
 


 

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

David Andrews

David’s Story

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

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

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

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

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

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

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

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

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

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

•       Family history beyond just his parents

•       Potentially relevant behaviors or trips abroad

•       The pattern of onset of symptoms

•       Major stressors in the weeks and months before onset

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

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

     What do you think might have caused this problem?

     What do you think you have?

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

     Other than physical symptoms, has anything else changed?

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

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

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

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

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

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