Patient Engagement Tip of the Month

• 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?

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
 

• 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

• 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.

• It normalizes asking uncomfortable questions. If you bring up questions about sex, hemorrhoids, or scars, people realize these must be common questions others have. It puts them at ease, and they feel more comfortable asking other questions.
• It lets them know you care about them and their concerns. They’re often incredibly grateful. It builds the relationship and can foster more intimacy.
• It can make the conversation more efficient – people don’t spend time dancing around their questions, building up courage, and figuring out how to broach a topic.
• It builds trust. When people see their caregivers get it and know what concerns them, they’re more likely to trust other information.  
• When you answer questions up front, they not hanging over people. So this can make it easier for them to focus on the rest of the conversation.

By 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)

by Gregory Makoul & Geri Lynn Baumblatt



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

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

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

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





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


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


 

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

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



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



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

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



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



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

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

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



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



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

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. 

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

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

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

• The word “promise” is powerful as it means something quite different when we say we make a promise to do something.
• The promise will help leaders standardize expectations and will be helpful in evaluating performance.
• The behaviors provide a clear understanding about how all staff can support the promise statements.
• Patients who participated in the process said it makes them feel more confident that we are willing to “make a promise” to them.