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Patient Engagement Tip of the Month

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


Posted: Friday, October 11, 2019

The Care You Give

By Geri Lynn Baumblatt
 
We ask a lot of clinicians and caregivers. And increasingly, their families ask more of them as well. They’re usually the first ones their families turns to when a relative or close friend needs care.
 
This informal family caregiving is often more challenging than medical professionals expect: dealing with insurance, other clinicians who may or may not see them as care partners, challenging family dynamics, etc. It also means they don’t get a break from caregiving. As we know, the employee experience is the foundation for a good patient experience.
 
And family caregiving can have a huge impact on the caregiver’s health, wellbeing, and it can contribute to burnout. The need to take expected and unexpected leave is also a big challenge for managers and teams. There can be compassion fatigue. And the caregiver can feel like they’re a burden or source of frustration to their team when they need to take unexpected leave, etc. Increasingly, people go part time or even quit their jobs to accommodate family caregiving.
 
As the need for family caregivers continues to grow, I’m partnering with researchers to study how hospitals might better support their nurses and other employees who are also family caregivers. For example, since we know that the median length of caregiving is 5 years1, and that 12 to 15% of caregiving goes on for 10-15 years2:
  • How might we better partner with employees to plan for extended caregiving?
  • Also, what services or resources would help them and their families? 
  • And how can we help managers who need to be compassionate and still make sure they’re staffed to deliver quality care?
These questions are part of in-flight research. If you’re interested to participate in it, please contact me: gerilynn@mac.com. I’ll also be sharing out findings from this and our 2018 research on nurse/family caregivers on a free webinar (see below).
 
How might we honor and learn from these experiences employees have on the other side of the bed?
 
What Hospitals Can Do Now
Everyone wants their experience to mean something and to help others. One way to engage nurses and employees who are currently family caregiving or when they return from extended caregiving is to ask them:
 
What insights do you have from your experience that could help the organization better support and engage the families we serve?




A Last Note
I’ve been blogging about patient engagement for AfPE since 2013. While I’ll continue to write, I’m broadening my focus and audience, and this is my last blog for this series. I’d like to thank Jim Merlino for asking me to blog, and all the co-authors who shared their insights, work, experiences, and research. I learned a great deal from all of them and made amazing friends in the process. Thanks to everyone for your comments and for reading! You can find me on Twitter @GeriLynn and @DiffCollab. Watch for my column on the Healthcare Scene.
 
1Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, Engineering, and Medicine; Schulz R, Eden J, editors. Families Caring for an Aging America. Washington (DC): National Academies Press (US); 2016 Nov 8. 2, Older Adults Who Need Caregiving and the Family Caregivers Who Help Them. Available from: https://www.ncbi.nlm.nih.gov/books/NBK396397/
2 National Alliance for Caregiving and AARP Public Policy Institute. (2015). Caregiving in the U.S. 2015 Report. 
https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf
 
Free Webinar: Designing a More Humane Workplace: Supporting Employees who Juggle Working & Caregiving
 
Catch up with me Nov 8-9 at the 4th Annual National Caregiving Conference in Chicago.



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

Tags: family caregiver, engagement, perspective
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Posted: Tuesday, September 03, 2019

When Gaps Become Sinkholes

By Geri Lynn Baumblatt & Teresa Wagner 

Letty’s Story


“Letty” was 25 when she gave birth to her daughter Ember. She had a healthy pregnancy without complications and was anticipating the birth of her first child with her husband Tom. They read books, went to doctor's appointments, and took classes. Letty gave birth to a healthy baby: Ember.
 
36-hours later at home, Letty began to have flu-like symptoms, extreme exhaustion, and fainting spells. She knew she didn't feel well and shouldn’t feel so exhausted. Finally, she started to have extreme pain in the vaginal area to the point where she knew she needed medical care. Letty had an infection and died just days after delivery. 
 
Letty joined the estimated 700 women who die in the U.S. from pregnancy or delivery complications each year. If she’d known her symptoms were an indication of a potentially life-threatening infection, she could have sought medical care before it was too late. If Tom had been educated along with her on postpartum warning signs, he likely would have taken her in sooner. 
 
Maternal deaths have increased sharply across the country in recent years. In 2015, the U.S. maternal death rate was 26.4 per 100,000 per live birth (GBD, 2015). This rate is more than double the 1987 U.S. rate of 7.2 deaths per 100,000 births (CDC, 2016). 
 
We take action when we understand
As with any area of medicine people need to understand when to act. They often second-guess themselves and lose crucial hours. Or they lack education or support due to poor access to care. Medicaid eligibility for many low-income pregnant women may be unstable. Depending on their pregnancy status, income, and state eligibility rules, they may experience interrupted care and delayed access to services or loss of coverage as soon as 60 days after birth (Daw et al. 2017). 
 
Risk factors associated with insurance loss after delivery include Low English Proficiency at home, being unmarried, having Medicaid or CHIP coverage at delivery, living in the South, and having a family income of 100–185 percent of the poverty level (Daw et al. 2017). Therefore, people often don’t understand or retain the vast information they get at discharge. Add to that, each individual’s ability to understand is also influenced by culture, sleep deprivation, physical and emotional changes, and possible side effects of medications (Chugh et al., 2009; Roman et al., 2017). 
 
In this case, improved education about the postpartum experience could improve women’s ability to recognize if symptoms are normal or if they require medical attention (Suplee, et al. 2017). To help address this, Teresa lead a research team who talked with local parents, maternity nurses, and community health workers to get their insights into new mothers’ educational needs and the cultural appropriateness of health materials typically provided.
 
Her team worked with TCU’s future nurses and professor, Marie Stark, RNC, to update the new mother discharge materials typically distributed through hospitals and found online. The resulting new brochure prototypes – used language that was easy to understand versus “medical speak.” 
 
Next, an online symptom checker was created, called “What About Mom?” Parents can learn in simple terms about potential health warning signs and actions to take that could potentially save their own lives. The checker can also assist those who lack access to care or don’t seek prenatal/postnatal care.
 
The symptom checker also includes info for partners, who may be the first to recognize something is unusual or troubling. If mom seems overly exhausted, isn’t eating or feeling well, is sad or overwhelmed, or has concerning physical symptoms, there’s a lot partners can do.
 


The new tools tested well with new moms, community health workers and veteran OB nurses. Each group agreed that the information yielded better understanding and evoked action needed to address postpartum symptoms that could be life threatening.
 
October is Health Literacy Month. And all patients need to understand their conditions, procedures, and know when to call. Consider the education your organization provides both verbally, onilne, and in print. 

  • Can your patients easily understand it and act on it? 
  • Have you asked patients and families what could be clearer? 
After all, clarity is power.



Teresa Wagner, DrPH, MS, CPH, RD/LD is an Assistant Professor at the University of North Texas Health Science Center in the School of Public Health. She has a passion for helping people navigate healthcare from watching her daughters struggle in the current healthcare environment. She works for SaferCare Texas as a Senior Fellow addressing health literacy. She established a multi-stakeholder health literacy collaborative in conjunction with the DFW Hospital Council Foundation and testified on health literacy legislation in Texas. Her testimony helped with getting health literacy into the State Health Plan. She recently received the 2018 Health Literacy Hero Award at the Texas Health Literacy Conference. @TravelingRD



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

Tags: patient education, experience, healthcare
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Posted: Thursday, August 01, 2019

Know My Story: Learning who people are improves life for older patients, families, caregivers, staff

By Susan Shelton & Geri Lynn Baumblatt
 

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
 


Tags: patient engagement, communication, engagement, patient
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Posted: Monday, July 01, 2019

Encouraging Question Asking  

By Cindy Brach and Geri Lynn Baumblatt

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
 


Tags: patient engagement, communication, doctor's appointment, patient
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Posted: Monday, June 03, 2019

There’s no place like home

By Dan Ansel and Geri Lynn Baumblatt
There’s no place like home. But going home to recover after a hospital stay can be daunting. And there’s good reason for concern. Even with the strides made in transitions to home, nearly 20% of discharged patients are readmitted within 30 days and over 50% within 1 year. 1
 
When people don’t thrive and recover well at home, it’s often because of the 3Ms: Medication,  Memory, and Mobility.
  • 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?
 

 
It’s easy to see how a problem with any of the 3Ms can contribute to a fall, medication issue, or infection. And not being able to do things for yourself, even temporarily, is often emotionally draining. I remember coming home after a car accident with my arm in a sling. It was upsetting when I couldn’t figure out how to open and pour a glass of milk for myself. The next few days did not go well in terms of self care.
 
One way to help people return home successfully is Occupational Therapy (OT). A study in Medical Care Research and Review by Rogers, et al. 1 used Medicare claims and cost data to look at the association between hospital spending for 19 spending areas (including OT) and 30-day admission rates for 3 conditions: Heart Failure, Pneumonia, and Acute MI. . They evaluated 2,791 hospitals for the heart failure analysis; 2,818 hospitals for the pneumonia analysis; and 1,595 hospitals for the acute MI analysis The findings:
 
Occupational therapy was the only spending category where additional spending has a statistically significant association with lower readmission rates.”
 
OTs ask and address a key question:

Can the individual be safely discharged into her or his environment?
 
OTs assess the individual’s ability to perform activities of daily living (ADLs), environment, and the specific tasks the individual needs to be able to do. They analyze how any problems intersect and then create strategies to improve function, safety and independence. Whether it’s helping the patient gain strength or re-master a task, modifying their environment by installing grab bars or lowering where cabinet items are stored, or training family caregivers -- these are critical factors for success and for quality of life.
 
The study found these 6 OT interventions can improve transitions to home:2
  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.
OTs can play a vital role in transforming health care in acute and post-acute settings by looking at the factors that affect health, specificly daily habits and routines, with the goal of improving function, health literacy, independence, and the safety of patients as they return home.
 
This creates a better patient experience, boosting confidence and self-efficacy, while improving outcomes and ensuring patients can safely return where they most want to be: Home.
 
 
  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 RatesMedical Care Research and Review, 2016; DOI: 10.1177/1077558716666981
 

 
Dan Ansel is co-founder and President / CEO of Private Health News and Active Daily Living: content marketing and population health platforms that build ongoing, targeted relationships with health consumers, clinicians, employees, and family caregivers – and help seniors stay active, safe and independent. He frequently speaks at national conferences and publishes articles on: Managed Medicare, Acquisition and Retention, Work / Life programs, Direct Contracting with Employers, and Behavioral Health Care.  He has masters degrees in Educational Psychology and Health Care Services Administration, and is a Certified Aging-in-Place Specialist.
 

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

Tags: patient engagement, communication, personal healthcare, patient education, experience, patient
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Posted: Monday, May 06, 2019

Slow Medicine

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


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

 
Baumblatt1.jpg

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

 

Tags: patient engagement, communication, engagement, listening, patient
0 comments
Posted: Monday, April 01, 2019

When Your Own Health is the Best Medicine for Patients

By Geri Lynn Baumblatt & Shiv Gaglani

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
 


Tags: personal healthcare, expectations, experience, patient
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Posted: Monday, March 04, 2019

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

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



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

Catch up with Geri this Spring at:

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



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

Tags: patient engagement, communication, patient education, expectations, experience, patient
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Posted: Friday, February 01, 2019

Extending Time With Patients: No Time Travel Needed

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



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

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



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

Tags: patient engagement, communication, doctor's appointment, engagement, experience
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Posted: Wednesday, January 02, 2019

Behind Worry Lines: Anticipating Patient Concerns

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

BehindWorry.jpg

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


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

 
 

Tags: communication, patient education, expectations, engagement, patient
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Posted: Monday, December 03, 2018

Do we have a heard mentality?

By By Geri Lynn Baumblatt & Chris Heddon

By Geri Lynn Baumblatt & Chris Heddon

 

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

 

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

 

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

 

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

 

 

 

Picking Up on Signs of Hearing Loss

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

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

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

 

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

 

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

 

Helping people adapt to hearing aids

 

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

 

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

 

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

 

 

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



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


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

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

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

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

Michelle in the Republic of Kiribati

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



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

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


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

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

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

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

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

Getting Engagement Right: Start with the Patient Perspective

By Gregory Makoul & Geri Lynn Baumblatt
 

by Gregory Makoul & Geri Lynn Baumblatt



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

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

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

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





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


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


 


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

Reframe Your Story: Images that Connect

By By Geri Baumblatt, Dr. Michael Bennick & Steven Koppel

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

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



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



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

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



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



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

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

 




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



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



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


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

Making it Click

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


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

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

 



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


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

Making the Journey Part of Engagement

By By Dhruv Vasishtha and Geri Lynn Baumblatt
 

ArticlePhoto

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


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

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

By Geri Lynn Baumblatt MA and David Andrews


David Andrews

David’s Story

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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

•       Family history beyond just his parents

•       Potentially relevant behaviors or trips abroad

•       The pattern of onset of symptoms

•       Major stressors in the weeks and months before onset

 

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

 

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

     What do you think might have caused this problem?

     What do you think you have?

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

     Other than physical symptoms, has anything else changed?


 

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

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

 

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

 


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

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

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

Safe! Caregivers Who Feel Cared For Bring Their Best Game

By Geri Lynn Baumblatt MA and Dr. Roni Zeiger


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


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

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

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

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

By Geri Lynn Baumblatt

Geri Lynn Baumblatt MA

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


Catch up with Geri
 
April 9-10 at the Lown Conference in DC
 
April 17:
•   Catch her in a panel on family caregivers and care transitions with MaryAnne Sterling, Danny vanLeeuwen, and Amy Cain at the Beryl Conference in Chicago.
•   Also on April 17: join Geri, MaryAnne and Danny for the Chicago Participatory Medicine Reception in the Living Room at the Chicago Hyatt: 
https://www.eventbrite.com/e/chicago-participatory-medicine-reception-tickets-44352929807



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

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

 

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

Putting Family Caregivers on the Map

By Geri Lynn Baumblatt MA

Geri Lynn Baumblatt MA

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


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

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

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

Connecting the Social Dots

By Geri Lynn Baumblatt & Diana Deibel



Diana Deibel


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

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

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

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



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

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



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

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

By By Geri Lynn Baumblatt & Shai Levi

 



Shai Levi

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

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

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

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

 

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

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

By Geri Lynn Baumblatt and Victoria Baskett
Victoria Baskett
Victoria Baskett

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

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



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

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

Engaging Patients, Families & Staff with a Promise

By By Geri Lynn Baumblatt & Julie Becker


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

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

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

When Side Effects Get in the Way

By By Geri Lynn Baumblatt & Mia DeFino

Mia DeFino

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

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

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

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

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

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

Amy_Bucher_007.jpg 
Amy Bucher, PhD 
 
How much alcohol do you drink each week?
Do we need to do an STD test today?
Have you been feeling depressed?
Are you taking your medication every day?
Does your family have enough to eat?
 
Did you flinch when thinking about how you’d answer any of these questions?

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



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



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

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

Join Geri:


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

Empowering Patients with a Common Language

By By Geri Lynn Baumblatt & Liz Salmi
 








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

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


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

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

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

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

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

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

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


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

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

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

The Expectation/Experience Gap

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Co-author: Carly Thanhouser

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


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

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

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Co-author: MaryAnne Sterling

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


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

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

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


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

A Clear Path to Better Recovery

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By Emily Azari with Dr. Elizabeth Wick

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

 


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

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

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Co-author: Don Rubin, PhD

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


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

Fostering Patient and Family Partnerships

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