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Patient Engagement Tip of the Month

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

Showing all Blog Posts with tag: communication View All Blog Posts
Posted: Monday, May 07, 2018

Safe! Caregivers Who Feel Cared For Bring Their Best Game


•   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
Posted: Wednesday, April 04, 2018

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


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: 

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
Posted: Tuesday, March 06, 2018

Putting Family Caregivers on the Map


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
Posted: Wednesday, January 17, 2018

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



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
Posted: Tuesday, August 22, 2017

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

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
Posted: Thursday, July 13, 2017

Engaging Patients, Families & Staff with a Promise


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
Posted: Wednesday, June 14, 2017

When Side Effects Get in the Way


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
Posted: Tuesday, May 09, 2017

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

By Amy Bucher, PhD & Geri Lynn Baumblatt, MA

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
Posted: Tuesday, January 24, 2017

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


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
Posted: Wednesday, August 31, 2016

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


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
Posted: Wednesday, July 27, 2016

Fostering Patient and Family Partnerships


Co-author: Doug Della Pietra

At Rochester General, the PFAC was taking on big challenges. However, big changes take longer to see results. We can’t do everything all at once, so we asked: If we significantly improved the patient experience over the next 3 years, what will we have changed and implemented? >>>

Tags: communication, patient advisory councils
Posted: Tuesday, March 29, 2016

Engaged with Sax


Co-author: Danny van Leeuwen

Shopping for a new neurologist I had three screening questions:  

  • What's your response time to emails? 
  •  Do you use OpenNotes?  
  •  How would you work with my acupuncturist?   >>>

Tags: patient engagement, communication, shared decision making
Posted: Thursday, September 24, 2015

Time to Give Up the Car Keys?


Engaging Patients & Families in Conversations about Aging & Driving

Nate O'Keefe
Co-author Nate O’Keefe (featured left) is the co-founder and CEO of Roobrik, a Durham, NC-based startup that builds online tools designed to help older adults and their families make informed care decisions. Nate has spent more than 10 years with companies including Modality, Epocrates, and AthenaHealth creating products that deliver high stakes health and care information to clinicians, students, patients, and family caregivers.

When families of aging parents ask clinicians and caregivers: “Should mom keep driving?” you know it’s a loaded question. You may feel like you’re being asked to be the bad cop. How do you make recommendations that minimize risk for your patient and other drivers and pedestrians?  How do you help families think through the trade-offs between safety and independence?
It can be even more difficult to broach the subject when health conditions arise that make driving riskier and you’re NOT asked about it. For most of us, driving was our first real taste of independence and it defines our ability to be productive, social, and engaged in society.  How do you steer someone down the path of cutting back or stopping while helping them understand there are alternatives (and even benefits) to giving up the keys?
For those of you who don’t talk with families about driving as part of your routines, or who still struggle with difficult situations, we offer three resources:
  1. Your clinical peers
For many patients, an office visit is not sufficient to fully evaluate driving ability, and without an accurate picture of ability, you risk having your patient either stop before they need to or continue for too long. Here’s where an occupational therapist can be your best friend. In a standalone practice or as part of a driving clinic, OTs can do functional clinical and road testing to assess ability and recommend modifications to make driving safer. Find an OT-CDRS.
  1. Best practices
In 2010, the AMA and NHTSA collaborated to produce the Physician's’ Guide to Assessing and Counseling Older Drivers. This free publication is extremely comprehensive and highly practical, covering assessment, rehab, medical conditions, state laws, and much more, with frequent sample scripts to use for difficult situations and conversations.
  1. Tools to engage patients & families
    This issue often marks the transition from doctor-patient to a doctor-patient-caregiver relationship. All of the sudden, you’re not just engaging directly with the patient but also their concerned family. After all, the family is often responsible for carrying out the decision and supporting the patient through this transition. In addition to traditional resources like the AARP, free interactive tools to assess driving ability like the one developed by Roobrik can help families assess the situation and make a plan for limiting or stopping driving.
Remember, this issue if often the beginning of an important transition. Driving safety presents an opportunity to start a dialogue about changing needs and to put a process in place that encourages open communication around not just health and wellness issues, but the care issues that will begin to define this new phase of life.
October is Health Literacy Month on EngagingThePatient

Hear from patients, family caregivers, clinicians, health literacy researchers, patient educators and others about the intersection of health literacy and transitions every weekday in October. Visit engagingthepatient.com to read the articles or to subscribe to the blog.

Tags: patient engagement, communication, family caregiver
Posted: Thursday, August 27, 2015

Helping People Find Their Language of Recovery


David FestensteinCo-author David Festenstein (featured left) is a communication specialist, coach and professional speaker who made a remarkable recovery from a stroke which had paralysed his right side and left him unable to walk. More about his story can be found at www.strokerecovery.co.uk. To connect with David, please email him at david@strokerecovery.co.uk or by phone +44(0)1923 663275 in the UK or on Twitter @RecoveryGuru.

Recovering from an injury, procedure or stroke isn’t just hard physical work, it’s also hard mental and emotional work. After a hemorrhagic stroke, this is something David Festenstein experienced first hand. People are depressed and discouraged, and it’s easy for them to focus on what they’ve lost. These thoughts can actually affect their road to recovery. But positive thoughts can fuel a better recovery. Studies show it can affect the immune system (e.g. Kohut,  et al. 2002 and Blomkvist et al., 1994) and help people stay more socially engaged (Carver et al. 2003). But in the aftermath of something like a serious stroke, how can we help people get there?

Getting It Down On Paper

Ask patients to keep a diary where they (or if writing isn’t possible, a family member) can record their thoughts and frustrations and what’s happening. But also encourage them to write down anything good that happens or anything they’re grateful for no matter how small. David started by looking around at other stroke patients and realizing that even though his was bad, because he was left-handed and the stroke had affected his right side, he could still write. This reframing gave him a sense of gratitude for what he still had.

David tried to find a few good things each day and wrote them down. After his first shower and shave in the hospital made him feel human again he thought: “if I can have a shower and be clean every day, then i can get through this.”

Over time, the practice of noticing and writing down anything good adds up and help creates a more positive outlook. This also creates a record of progress where people can look back through it and see there is change, maybe change they didn’t notice at the time.

Helping People Find Determination

Also help people write down personal goals that matter to them. For David it wasn’t just to use his hand or walk again, but:
  •   To be able to hug my family with both arms
  •   To walk to the toilet and back
  •   To be able to type again on the PC
  •   To visit my dad in the care home

Writing With Belief and Intention

His physical therapist gave him what seemed like the strange “exercise.” He was to rest his paralyzed hand on a cushion and focus on it while opening and closing his good hand. Even though it wouldn’t feel like anything was happening, it would help his brain re-route its neural pathways. The act of writing through recovery is similar. It may not seem anything is happening, but our brain is processing our path through recovering and learning how to think about recovery.

During those days when he was just staring at his hand and nothing seemed to be happening David would think and also write: “I can do this. I will get there. This will happen.” He noticed as he used this kind of language, he felt it improved his physiology. And after a few days, his fingers just barely began to flicker. But that gave him the inspiration he needed to go two more weeks until he could open and close his hand.

How do you use journals as part of recovery?

Family members also find them helpful - to see that progress and process their role in recovery. Do people ever share insights with staff? Tell us your stories.

Tags: patient engagement, communication, personal healthcare
Posted: Wednesday, July 29, 2015

Engaging Patients Before You Even See Them: Tools to Help Patients Prep for Appointments

Co-author: Peggy Zuckerman, Patient Advocate (featured left) is a Patient Advocate with expertise in kidney cancer issues. She is also on the Board of the Society for Participatory Medicine, a Patient Consultant for Prometheus Labs, and a Patient Reviewer for PCORI and the Dept of Defense. She was part of the SIDM (@ImproveDX) patient panel to develop the Patient Toolkit. @peggyzuckerman

For both patients and providers, appointments often are not all they could be. Ill-prepared and stressed by the problem and the visit, patients may not remember all their symptoms and can forget both their medications and elements of their own medical histories. Doctors are known to interrupt, and can make a diagnosis too soon. Helping patients create a more coherent history and giving them access to any existing lab or test results before they come in can improve the in-person visit.

A new Patient ToolKit from the Society to Improve Diagnosis in Medicine helps patients think through and capture their symptoms and history in advance. It helps them create a medication list and any treatments tried so far. When patients fill this out at home with access to their own records, it’s also likely to be more accurate. The toolkit also gives clinicians insight into patients’ concerns, how they care for themselves and view their problems.  

As part of this, if patients have their labs and can review them before the appointment, they can prepare questions, and with a bit of homework, may understand them. A second appointment to review labs might not even be needed, and may lead to an earlier diagnosis.

Getting down to the details

Other tools can help patients prep for a specific visit, like a chronic pain consult, in a more meaningful way. For example, patients can view a web-based program at home. (Clip courtesy of Emmi Solutions).   

This gives them time to contemplate their personal treatment goals. They may be walked through an exercise to help them recognize what they would do if they had better control over their pain:
  •  Take the kids or grandkids to the park?
  •  Get back to a favorite hobby?
  •  Get through a full day at work?
  •  Or take fewer pills for the pain?
Giving people time and tools to help them hone in on their personal goals provides meaning for the consult and treatment plan beyond: “I would like to have less pain.”

Most importantly, these pre-appointment tools give people time to track and document their pain, and give them insight on how to describe the quality and architecture of their pain. People want to feel better. Most are willing to do a little advance work to make progress; they just need a bit of help knowing where to start and what to do.

Tags: patient engagement, communication, technology
Posted: Tuesday, June 30, 2015

Channeling Your Inner Sherlock Holmes

Lynn Charbonneau
Co-author: Lynn D. Charbonneau, MBA, Director of Patient Experience at Northside Hospital
Making a personal connection to the patient right from the start can engage them and set the tone for their entire experience. But there’s a better way than simply asking a patient, “How are you?” When you step back to think about it, is it any wonder people often reply, “How do you think I am? I’m lying in a hospital bed.”  

How can we ask a more personal question and make a better connection? Look for cues and clues. Are there flowers in the room?  If yes, say, “Who sent you the lovely flowers?” Is there a card on the bedside stand or in the window sill? Who sent it? Is there a photograph in the room?  What are they watching on TV? Noticing anything new can spark a conversation and gives them a chance to talk about the people and things that matter to them.

Next time you return to their room, if there doesn’t seem to be anything new to ask about – is or was there a person at the bedside to ask about? Or if a patient looks concerned: “You seem worried, what’s on your mind?”  

This method of “asking with skilled inquiry” with open-ended questions gives the patient an opportunity tell their story. It’s an invitation to open up.

At Northside Hospital, HCA West Florida Division, every meeting, every huddle is opened with a “Mission Moment.”  This creates an opportunity for everyone to tell these stories, gives everyone a chance to recognize how we feel connected to the patients, and to feel good about the work we do.  This also creates a better experience and more of a connection for the caregivers. It’s easier and more meaningful to care for people we feel connected to.

Recently, I was rounding and saw one of our patients and his wife was sitting on the bed. I walked in and introduced myself, and he asked me “Why is it YOU people always ask the same questions over and over? Don’t you talk to each other?”

I explained we ask the same questions because we want to make sure patients tell us as much about their history as they can. Then I asked, “Who is this lovely lady?” 

A big grin came across his face, and he said, "This is my wife of 46 years.” His perspective shifted from being annoyed to being cared about and having a chance to talk about who matters to him.

Lynn D. Charbonneau, MBA, Director of Patient Experience at Northside Hospital, part of HCA’s West Florida Division.  With 39 years of healthcare experience with 25 years in patient experience improvement, she has a national reputation for her work around coaching and transforming organizational culture. @ldcharbonneau

Tags: patient engagement, communication, rounding
Posted: Wednesday, April 29, 2015

Meeting the Patient’s Communication Needs

Co-author: Randi Redmond Oster, author of Questioning Protocol

When Randi Oster’s 15 year-old son Gary was first admitted to the hospital for Crohn’s disease, he was in massive pain. Unfortunately, his regular GI doctor is away at a conference.  The family waited for hours until a physician arrived and did a quick exam and said, “He’s an excellent candidate for surgery.”

The family was stunned. Surgery? No one had ever mentioned this before. To them, this came out of left field. And based on Randi’s past experience with her father, she felt any surgery was fraught with risk and was something to be avoided whenever possible.

Randi had nothing but questions. And their family was not comfortable deferring to the first recommendation. She realized launching into a barrage of questions might put the doctor on the defense.

She decided she first needed to help the new doctor understand their family. She explained that her son is analytical and literal; and that he likes and needs a lot of details and facts.

Randi also explained that while the protocol might be surgery, their family’s process was to gather options, ask a lot of questions, understand the risks and benefits so they can share in the decision and be involved and informed every step of the way.

By being clear up front about the level of information they needed, the physician and medical team were able to meet expectations and provide more detailed and in-depth communication to help find the best option for Gary.

Meeting communication needs: one size does not fit all

Most patients and families won’t proactively jump in to explain what they need or want when it comes their communication style and preferences. Ask patients who they are and what to they want. For some, a lot of details are overwhelming, for others these details help them think through the nuances. And ask how involved would they like to be in decisions?

Research shows that when patients share in the decision making process most (74%) have more realistic expectations.[1] That can make for better decisions and a better patient and family experience.

[1] Source: Impact of Decision Aids The Cochrane Library 2014, Issue 1

Randi Redmond Oster is the award winning author of Questioning Protocol, which helps patients navigate the healthcare system and medical professionals understand the patient perspective. She is also the co-founder and president of Help Me Health, which transforms how healthcare thinks about and delivers patient experience to achieve better outcomes. @helpme_health

Tags: communication, shared decision making
Posted: Monday, March 30, 2015

How to Start a Hard Conversation: Engaging Patients in Advance Directives

Diana Dilger
Co-author: Diana Dilger, Senior Writer, Emmi Solutions

No one likes to bring up death. People like it even less when it’s about them. But that’s not a good reason to avoid it. It’s an important discussion, and we have a responsibility to promote these conversations so patients can have a say in what they do and don’t want.

How do you bring it up?
First, if someone isn’t seriously ill, bringing up advance directives (AD) can seem jarring and out of the blue. It can help to ease into it by saying things like, “Since everything looks good now, this would be a great time to talk about what you might want if you ever do need something and can’t speak for yourself.” Or normalize it: “It looks like you don’t have AD on file. We try to have those for everyone in case you’re ever in an accident; it’s a great safeguard.”

For people who are ill and know something could happen, it might sound more like, “We have your treatment planned for now, but let’s talk about what you may or may not want if treatment doesn’t go the way we hope.”

Then, explain how ADs are a gift to their family. If someone is in an accident or becomes unable to speak for themselves, and there aren’t ADs, it can create a lot of stress, guilt, disagreement, and confusion for their family. So getting it down in writing and alerting everyone to what they want in advance can be a big relief. It's like leaving a guide book for their loved ones.

Address Common Concerns
People are afraid once they create ADs, they’re locked into them. Letting people know they can change them at any time if their wishes change puts people at ease. It also helps to emphasize that putting an AD in place does not mean they’ll get less care. Instead, saying what they do and don’t want helps ensure they’ll get the care they prefer.

National Healthcare Decisions Day
April 16 is dedicated to encouraging people to discuss and document advance directives.
Check out all the events going on for National Healthcare Decisions Day.

Help Everyone Understand
To help educate the public, the multimedia Advance Directives Emmi program will be freely available to the public for two weeks, starting April 16. View it here.

Learn from Experts
A complimentary webinar on with Dr. Ira Byock and Dr. Sheri Kittelson on
Engaging in End of Life Decisions: How to Turn Difficult Conversations into Clinical Opportunities
11 am Central on April 16. Sign up here.

Diana Dilger is a senior writer at Emmi Solutions. She wrote the multimedia Emmi programs on advance care and end-of-life treatment (Advance Directives, Hospice Treatment Options, and Palliative Care). In addition to encouraging others to talk about end-of-life wishes, she boasts a shiny, new set of advance directives for herself. @dianadoesthis

Tags: communication, end of life
Posted: Thursday, February 26, 2015

Engaging Patients in Hourly Rounding: Improving the Patient and the Caregiver Experience

Co-author: Greg Berney, Senior Manager of Patient Experience at Cone Health
Several months ago, a Patient Experience Manager at Cone Health was rounding with a nurse on a med/surg department. We’ll call him “James.” As James discussed different patient experience improvement tactics, he verbalized a concern with hourly rounding logs. “Each time I put my initials on that log I feel frustration with leadership because it feels like they don’t trust me.” Leaders, in turn, felt frustrated because the logs were their only way of ensuring hourly rounding was happening.

While James identified a lack of trust as his main frustration, this also articulates a greater challenge in improving the Patient Experience: ensuring our goals and how we motivate caregivers to meet those goals match. As James would tell you, there is nothing about writing his initials on a log sheet that help him provide better care at the bedside. In fact, the log sheet introduces a new goal and motivation for many caregivers - fill it out faithfully and you won’t be hassled by your boss! Hourly Rounding had become a task for James instead of a tool that to provide better care.

How can we tap into caregivers’ natural motivation, and partner with patients, to improve the patient and caregiver experiences at the same time?

At Cone Health, Hourly Rounding was re-launched with a specific focus on helping caregivers understand what’s in it for them. The entire training is around helping each nurse proactively communicate to their patients in a way that ends up reducing call lights.

The best part: patients who hit their call light less frequently tend to do so because they feel their needs are being met!

Engaging Patients In the Process

Instead of using rounding logs to validate their process, Cone has added a question to the Patient Perception of Care survey specifically asking the patient if a nurse came in the room every hour.  Additionally, some patients give this feedback in real time by keeping their own log sheet of which staff members came in the room and when.  

Patient tracking provides added patient engagement benefits that aren’t available through traditional tracking methods:
  • Patients automatically have a better understanding of the processes, which reduces anxiety or fear about being in pain or being forgotten.
  • This allows patients to more naturally partner with caregivers to ensure their needs are met on a mutually convenient schedule.
  • Staff have additional motivation to explain the purpose and process of rounding.  
One could easily view Hourly Rounding as a transactional task - something that we do to patients. Instead, engaging patients creates a more interactional model in which patients are informed and empowered.  In this way, patient engagement leads to improved caregiver experience as well.  

Greg Berney is the Senior Manager of Patient Experience at Cone Health in Greensboro, NC where he addresses organizational Patient Experience and Patient Engagement opportunities from problem identification through innovation, planning, and execution of improvement initiatives. Greg provides project management and consultation for an organization of 6 inpatient hospitals and 100+ emergency, ambulatory and outpatient areas in close collaboration with senior administrative and physician leadership.  Greg’s recent speaking engagements include the Beryl Institute Patient Experience Conference, Dignity Health’s Patient Experience Summit, and the NextGen Patient Experience Summit. Follow Greg on Twitter at @gregberney.

Tags: patient engagement, communication, rounding, employee engagement
Posted: Friday, December 19, 2014

Beyond Sticks and Stones

The old adage ends “…but words will never hurt me.” And most of us agree words may hurt feelings but not cause physical pain. However, we also know the emotional and physical are not completely discrete and separate experiences. We’ve all experienced how language or even a friendly text message can affect our mood and emotions. But more evidence points to language having an impact on at least some physical experiences.
This year, at the International Conference on Communication in Healthcare, a symposium on communication and pain discussed recent research showing that while words, themselves, may not literally hurt people, language, tone, or just avoiding the word “pain” can have an impact.
For example, women recovering from a C-section were either asked: “How are you feeling?” or “Do you have pain?” Did the phrasing of the question change reported pain? It did.
  • When asked “How are you feeling?” only 24% of women reported pain.
  • And when asked, “Do you have pain?” that percentage more than doubled, with 54% reporting pain.
A similar study asking women to rate “pain” vs. “comfort” on a 0-10 point scale also found the women who were explicitly asked about pain had higher pain scores.
As psychometricians and political pollsters know, how we ask questions matters. And that’s not always a bad thing. In this case, asking a more open-ended question may improve the experience or perception of pain.

Tags: communication, pain management
Posted: Tuesday, September 30, 2014

Asking Questions, Not Just Giving Information: Shared Decision Making is Relational

Gonzalo BacigalupeGonzalo Bacigalupe is Professor of the Master of Science in Family Therapy Program and the PhD in Counseling Psychology, College of Education & Human Development at the University of Massachusetts Boston. He is President of the American Family Therapy Academy. Bacigalupe is co-principal investigator of a Patient-Centered Outcomes Research Institute Pilot research project: Influence and evidence: Understanding consumer choices in preventive care.

Because the benefits of cancer screening and its usefulness for a wide group of patients are uncertain and the harms may outweigh the potential benefits, doctors and patients need to engage in shared decision making (SDM). And while this sounds straightforward, it’s often challenging.
We’ve both been involved in developing SDM tools to guide breast and prostate cancer screening, Gonzalo with a focus on Latino patients. 
Most SDM research is based on the idea that patients make individual decisions. So the focus has been on understanding how patients acquire and make sense of information that’s often packed with statistical, epidemiological, and probabilistic data. And we ask how well people comprehend it. 
Missing from this equation is how many people operate not just as individuals but also as one person within a net of family and community relationships. Most Latino patients talk through these decisions not just with their close relatives, but also with their extended family and other significant members of their network. Decisions about prevention, diagnosis, and treatment are not just in the working of their individual minds or a cognitive process, but located in the ecology of relationships.
For vulnerable patients, besides having more difficulties at making sense of complex data, the question of how we explore their approach to decision making is central and requires cultural humility.
So what can clinicians do?
Ask about patients' social and cultural context and be curious about how they make sense of healthcare decisions. These questions are an example of how we may capture the rich context and story that may play a pivotal role in how the patient participates in the decision making process.
I know this is a lot of information, if you were to discuss this with a family member or friend, what would be the outcome of the conversation?
What other information do you need to help you make a decision you feel comfortable with?
How would these options affect you and your family’s day-to-day life and their ideas about you?
The epidemiological or probabilistic data, no matter how attentive is to the literacy level of a specific community, will be meaningless if we do not understand who and what plays a significant role in complex healthcare decisions.

Tags: communication, shared decision making, family caregiver
Posted: Monday, June 23, 2014

Strategies to Help Patients Make Medical Decisions

Medical decisions are daunting. Just walking people through their treatment options can be time-consuming. But how can we help people think about their preferences and life and make a decision that's right for them?

One approach is providing people with videos or written stories (narratives) of what others chose. After all, stories are more engaging and compelling than throwing a lot of numbers and information at people, but do they help people make good decisions? Researchers continue to take a closer look at the effects of narratives, and unfortunately they seem to cause different types of biases and issues. The issue with narratives may be that they are so compelling. (To read more about recent research on patient narratives visit http://engagingthepatient.com/2014/06/25/patient-narratives-shared-medical-decisions/)

Another approach is to help people "try a decision on." For example, instead of simply asking a woman with breast cancer how she feels about breast reconstruction or a prosthetic, ask her to think through different situations, like how she would feel putting on a favorite dress, changing in a locker room, or wearing a bathing suit. This type of thought exercise may help people get a sense of their own narrative without feeling the emotional tug of someone else's story.

Clearly, we need more research to know what we can do to help people apply their preferences to the often complex matrixes of treatment options, side effects, and treatment burdens. What have you tried in your practice to help people integrate their personal preferences into their decisions?

Tags: patient engagement, communication, shared decision making
Posted: Wednesday, May 28, 2014

When Caring for the Family Reduces Patient Stress

What do patients experience as they drift in and out of awareness in an ICU?
Recently, a couple of long-term ICU patients both described how even when they weren’t fully conscious, the mood of the staff as they moved in and out of their room was still apparent to them. They could tell if people were present or smiling, and how even the one-sided conversations staff had with them were meaningful.
One patient also described how he had a very strong sense of his parents’ stress as they kept watch by his bed and how it reduced his stress to hear how the staff was caring for his parents.
It's impossible to always be “up,” but care, hospitality, and mindfulness of close family and friends may reduce patient stress, even when we think they’re not aware. After all, while everyone is worried for the patient, their worry is often for their partner and family.

Tags: patient engagement, communication, family caregiver
Posted: Monday, February 24, 2014

The Case of the Unfilled Rx

With medical ads on TV some people go to doctor's asking for a medication they’re sure will cure what ails them. But more often, when a new medication is being prescribed, people are dubious. And they’re not likely to express it aloud. Do they really need it? Maybe their uncle took statins and now has leg pain – a valid point informed by real-life experience. Other times people may feel stigmatized if they need to take a second medication for something like diabetes, and if it’s an injectable, fear of needles is enough for many people to silently decide “no.”

So many reasons to avoid taking a drug, and yet we often assume people are simply non-adherent. But maybe we never made sure they agreed to take it in the first place.

People definitely need to understand what the medication is for and why their doctor thinks they should take it. But if we don’t ask patients about their goals and preferences, we can’t know if they do or don’t want it, or if another medication or treatment might be a better option for their lifestyle. But there’s no way to know without asking. We can’t expect people to feel comfortable volunteering this information. And without inviting patients to share their concerns and preferences, they may just nod, politely put the prescription in their bag, and walk right past the pharmacy.

Tags: patient engagement, communication
Posted: Monday, January 27, 2014

Helping Patients Understand the Big Picture

When it comes to the big picture of a health condition and how it may affect people’s bodies and lives over time, it’s easy to take what we understand for granted and assume patients and families know, too.

I was recently struck by this while working on a decision aid for End Stage Renal Disease. When we tell people who are newly diagnosed or living with diabetes that over time it can cause kidney problems, do they really understand they may be on a trajectory toward renal disease, dialysis and kidney failure? Or do we simply say it can cause “serious problems” and take for granted they know what lies ahead? I think it takes a lot of people by surprise – and it’s not a nice one. In fact, we often begin our interviews of patients who are starting treatments like dialysis with what they wish they’d known.

A local nephrologist told me that as many as 30% of their first-time appointments never show up, because people with diabetes have no idea why they’ve been referred. We heard this from patients themselves in our Crohn’s Disease focus groups. We were concerned all the information about ulcers and anal fistulas was too scary and overwhelming. But what we heard is: this is the real information I wish I’d understood when I was first diagnosed.

Now, I’m not talking about “scaring people into being good patients,” or getting into all of this when someone is first diagnosed. Overwhelming people is not helpful. But making sure they understand enough about their condition and how it may progress can feed into why they’re being asked to do so much day-to day care. And it can help their family engage in their care, too.  

Tags: patient engagement, communication, health literacy
Posted: Monday, December 23, 2013

Baby Steppin'

Baby steps, goal setting, action planning … you may have heard of one or all of them. So instead of giving people an overwhelming list of all the changes they should make to their diet, lifestyle, and activity, this is a great way to help people make changes by taking baby steps. Give it a try.

Start by letting the patient make the decision about making one small, achievable goal they feel they can do that week. After all, when we are empowered to choose what we want to change and how, we’re a lot more likely to do it versus being told.

Then be prepared for pretty much any answer. If someone says they want to work on getting more exercise, ask exactly what they’d like to do first. Doctors have heard everything from: I need to clean my living room this week so I have a place to exercise, to I’ll walk 3 blocks, to I’ll do 100 push-ups everyday.

But how confident are they that they can almost certainly do it that week? Ask “on a scale of one to 10, how sure are you that you’ll be able to do this?"

Generally if people say anything less than seven, they need to set a more attainable goal or problem solve what they can do to improve their confidence so it’s in the high zone. Then follow up in one week to find out what they did.

Instead of being overwhelmed by everything they could do, people make a small change and gain confidence that they can change. And they’re usually encouraged and build on that success.

Like anything new, even something as simple as helping a patient set their first goal can be awkward. But like any procedure you’ve learned, it gets easier. And clinicians find they can do it in as little as two minutes.

If you want to learn more, people like Dr. Kate Lorig and Dr. Hilary Seligman have done great work on this: http://www.healthliteracy.com/article.asp?PageID=6111 & http://www.jabfm.org/content/19/3/324.long.


Tags: patient engagement, communication, shared decision making
Posted: Wednesday, November 20, 2013

Don't Forget "The Why"

I don’t know about you, but I don’t tend to blindly do things just because someone tells me to. Yet we expect patients to do this all the time -- and when they don’t we brand them “non-adherent.” We all have that inner 3-year old that just wants to know “why.” But more than curiosity, we need to make sense of the information.

And when we don’t give people “the why,” or assume they already know why, they will fill in the blank on their own. Take this real example: a bariatric patient is told not to eat or drink 8 hours before his surgery. No reason. Just do it. He shows up having had breakfast. When asked why he didn’t follow instructions, he says “Oh, I thought my doctor just wanted me to start dieting.”

This person is not stupid, he was just trying to make sense of seemingly meaningless orders. A story closer to home: a friend of mine didn’t heed instructions not to smoke in the days after oral surgery. Only after a dry socket developed did the oral surgeon explain that smoking both affects healing and that any kind of sucking action, including cigarettes, and not just through straws, can dislodge the blood clot. Once back home and in pain she said, “Well, if I had known that, I wouldn’t have smoked.”

Tags: communication
Posted: Wednesday, October 23, 2013

Talk About Myths

Big foot and the Loch Ness Monster aside, there are lots of myths and half-truths floating around healthcare. After all, if you’re breastfeeding there’s no possible way you can get pregnant, right?

Of course, you can wait to see if patients ask you about things like this, but chances are they may not realize something’s a myth, or a partial myth, especially when many things sound like common sense. Why would anyone doubt if bed rest is a good idea for low back pain? It certainly sounds right.

Plus, real experiences can reinforce myths. Many people still think the flu shot will give them the flu because they didn’t feel great the next day. They probably didn’t actually have the flu, but it still might mean they’ll avoid getting vaccinated for the next few years.

With something like breastfeeding it can just mean validating that it may play a role in preventing pregnancy, but it doesn’t guarantee a woman won’t get pregnant. For something like low back pain, it may be more challenging to help people understand that even though walking may hurt, that blood flow is important for their back to heal.

But proactively talking about common myths, and talking about them respectfully, can make all the difference in patient understanding.

Tags: patient engagement, communication
Posted: Friday, September 20, 2013

Be Psychic

That’s right, when telling people about a procedure or a new diagnosis, it helps to be a little bit psychic. To be fair, you don’t actually have to be psychic, so much as seem psychic.

You probably already know the questions, fears and worries patients have around certain procedures or diagnoses: When is it okay to have sex again? Will my scar be noticeable? When can I drive again?

These questions weigh on people’s minds. And it may even be hard for them to concentrate on anything else you say until they get an answer. Sometimes they feel embarrassed to ask because they have a question about something like ED or depression medication, other times they’re embarrassed that what they’re worried about is something cosmetic, like a scar. Or it’s the real day-to-day concerns about being able to care for their family.

So, if they don’t bring it up themselves, normalize those questions with a simple "now with this procedure, a lot of people ask…" It’s amazing the relief they feel to know they’re not the only ones with this question and that they didn’t have to be the one to bring it up.

Tags: patient engagement, communication, doctor's appointment