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Patient Engagement Tip of the Month

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

Showing all Blog Posts with tag: healthcare View All Blog Posts

Posted: Tuesday, September 03, 2019

When Gaps Become Sinkholes

By Geri Lynn Baumblatt & Teresa Wagner

Letty’s Story

“Letty” was 25 when she gave birth to her daughter Ember. She had a healthy pregnancy without complications and was anticipating the birth of her first child with her husband Tom. They read books, went to doctor's appointments, and took classes. Letty gave birth to a healthy baby: Ember.

36-hours later at home, Letty began to have flu-like symptoms, extreme exhaustion, and fainting spells. She knew she didn't feel well and shouldn’t feel so exhausted. Finally, she started to have extreme pain in the vaginal area to the point where she knew she needed medical care. Letty had an infection and died just days after delivery.

Letty joined the estimated 700 women who die in the U.S. from pregnancy or delivery complications each year. If she’d known her symptoms were an indication of a potentially life-threatening infection, she could have sought medical care before it was too late. If Tom had been educated along with her on postpartum warning signs, he likely would have taken her in sooner.

Maternal deaths have increased sharply across the country in recent years. In 2015, the U.S. maternal death rate was 26.4 per 100,000 per live birth (GBD, 2015). This rate is more than double the 1987 U.S. rate of 7.2 deaths per 100,000 births (CDC, 2016).

We take action when we understand
As with any area of medicine people need to understand when to act. They often second-guess themselves and lose crucial hours. Or they lack education or support due to poor access to care. Medicaid eligibility for many low-income pregnant women may be unstable. Depending on their pregnancy status, income, and state eligibility rules, they may experience interrupted care and delayed access to services or loss of coverage as soon as 60 days after birth (Daw et al. 2017).

Risk factors associated with insurance loss after delivery include Low English Proficiency at home, being unmarried, having Medicaid or CHIP coverage at delivery, living in the South, and having a family income of 100–185 percent of the poverty level (Daw et al. 2017). Therefore, people often don’t understand or retain the vast information they get at discharge. Add to that, each individual’s ability to understand is also influenced by culture, sleep deprivation, physical and emotional changes, and possible side effects of medications (Chugh et al., 2009; Roman et al., 2017).

In this case, improved education about the postpartum experience could improve women’s ability to recognize if symptoms are normal or if they require medical attention (Suplee, et al. 2017). To help address this, Teresa lead a research team who talked with local parents, maternity nurses, and community health workers to get their insights into new mothers’ educational needs and the cultural appropriateness of health materials typically provided.

Her team worked with TCU’s future nurses and professor, Marie Stark, RNC, to update the new mother discharge materials typically distributed through hospitals and found online. The resulting new brochure prototypes – used language that was easy to understand versus “medical speak.”

Next, an online symptom checker was created, called “What About Mom?” Parents can learn in simple terms about potential health warning signs and actions to take that could potentially save their own lives. The checker can also assist those who lack access to care or don’t seek prenatal/postnatal care.

The symptom checker also includes info for partners, who may be the first to recognize something is unusual or troubling. If mom seems overly exhausted, isn’t eating or feeling well, is sad or overwhelmed, or has concerning physical symptoms, there’s a lot partners can do.

The new tools tested well with new moms, community health workers and veteran OB nurses. Each group agreed that the information yielded better understanding and evoked action needed to address postpartum symptoms that could be life threatening.

October is Health Literacy Month. And all patients need to understand their conditions, procedures, and know when to call. Consider the education your organization provides both verbally, onilne, and in print.

Can your patients easily understand it and act on it?
Have you asked patients and families what could be clearer?

After all, clarity is power.

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

Posted: Monday, August 06, 2018

Making it Click

By Geri Lynn Baumblatt, MA

I spend a lot of time in hospitals, but it’s not where I was planning to spend Memorial Day. An older relative hit her head ad broke a couple of ribs – and so there we were.

I sat in the room as a nurse explained how and when to use the incentive spirometer to prevent pneumonia. Then something simple, yet amazing happened. He took an extra minute to explain that the pain of the broken ribs would prevent her from taking full breaths. And how using the spirometer to take deep breaths in would expand more of her lungs. That way, those small air sacs in her lungs wouldn’t collapse, fill with fluid, and get infected.

It was like hearing the last puzzle piece snap into place.

She got it, she understood the importance of the deep breaths, how her participation is what would make the difference -- and she was on it. She even started to explain it to the doctor when he came by.

We often THINK we’re connecting the dots for people. But are we giving them what they need?

Is it enough to tell people an incentive spirometer will prevent pneumonia? Probably not. I don’t think it’s about giving a full A&P lecture – but enough information to give people that insight into why and how – so their brain gets it.

I’ve been working with patients and family caregivers to ensure they understand what they can do before and after surgeries (like joint replacement) to recover well:

Get up and walk
Stop using nicotine in the weeks before and after surgery
Avoid opioids

Obviously, people want to have a smooth recovery. And I kept explaining one of the reasons these things help with healing are because they improve blood flow. But most people were still a bit stymied. They think of their bones as needing calcium, but not blood. It seems like a different system. It just wasn’t clicking. So starting with a little more on how the bones need blood put that extra piece in place so it made sense.

People were surprised and confused by the recommendation to get a dental checkup before joint replacement surgery. Telling people that gum disease or things in their mouth could lead to an infection in a hip or knee joint didn’t resonate. But explaining that any bacteria in their mouth could travel through their blood to their new joint helped it come together.

Are there best practices or instructions people rarely follow?
If so, take a step back and ask why it isn’t clicking for them. What’s missing in the explanation to them that we often take for granted? We forget what it’s like not to know the why or how of so many things we ask people to do.

Share your insights where you’ve seen it click for patients and families.

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

Making the Journey Part of Engagement

By By Dhruv Vasishtha and Geri Lynn Baumblatt

ArticlePhoto

Non-Emergency Medical Transportation: A new opportunity for patient engagement

A core challenge health systems and services providers face in patient engagement is attention. Thinking about one’s health care proactively requires thinking about one’s mortality, and who wants to do that?

Consequently, most patient engagement and patient experience centers around the few moments when people are required to think about their health: medical appointments, hospitalizations, discharges, and pharmacy visits.

Lately, a new touchpoint in the care journey is emerging as an important opportunity to build patient experience and drive greater patient engagement: non-emergency medical transport (NEMT). NEMT is any transportation service for people who aren’t in an emergency situation, but who need more assistance than a taxi service provides. It is a fast-growing segment in the healthcare workflow, where stakeholders can capture the attention of the patient or family member while they are already thinking about their care.

The recent entrance of Lyft and Uber into healthcare, Ford Motors’ GoRide, as well as several venture backed startups such as Circulation Health and RoundTrip provide solutions for the over 3.6M Americans who miss at least one medical appointment each year. The annual cost of missed appointments in the U.S. is $150B (including lost revenues and idle labor). And the Centers for Medicare and Medicaid Services (CMS) will begin to reimburse NEMT for medicare advantage beneficiaries. This new touchpoint in the healthcare experience is here to stay.

There are 3 NEMT opportunities for engagement:

1. Scheduling
If stakeholders are able to solve transportation for the patient during appointment scheduling and reminders, the focus of outreach can shift to preparation. Scheduling can transform a neutral process to a positive one, with patients able to focus more on their care. Hospitals could take information from the medical record and send SMS or email reminders along with tailored questions for patients to consider as they get ready for their upcoming appointment.

2. The Departing Trip
The ride itself is a valuable, defined window of opportunity to provide patients with information about their condition, community resource information via their own app, or utilize the NEMT provider app. During the trip, patients and family members could interact with chatbots, or take a call with a healthcare professional to provide basic information to make the appointment more productive, or enable hospital labor to be more effective during the appointment. For example, Circulation is currently rolling out pilots to prove the effectiveness of healthcare engagement during transportation. Patients are a captive audience during these trips, presenting stakeholders with the opportunity to engage them with important healthcare information such as pre- and post-visit data, or content to promote vaccine awareness.

3. The Return Trip
The NEMT ride back from an appointment may present an even greater patient engagement opportunity than the ride there. During this time, patients are in a mindset to reflect, and could digitally record or answer any questions people have. They could review their care plan and go over next steps. After all, how many times have you thought of a really important question after you have left the doctor?

Challenges
NEMT is not free of challenges when it comes to engagement. It requires coordinating multiple stakeholders, whether it’s the health system, the NEMT provider, or even the driver, to make the experience work. When it comes to drivers, NEMT requires training a new labor force of transportation drivers that are prepared to provide not just a ride-sharing experience, but a healthcare experience.

Creating an effective NEMT patient engagement experience requires both a time and capital investment with results that must be quantified. However, NEMT presents a rare opportunity to create new experiences, and gain valuable information and access from patients while they are in transit.

Dhruv Vasishtha is a healthcare technologist with experience in early stage mobile, wearable, and AI technology. His experience includes strategy and product management at healthcare companies including Medidata and ZS Associates, as well as founding two health IT startups. He received his MBA from The Wharton School in Health Care Management, and his BA from Columbia University. He currently invests in and advises healthcare technology startups and is organizing the inaugural Innovation in Caregiving conference. @dvasishtha

Tags: patient engagement, communication, doctor's appointment, experience, healthcare, patient
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Posted: Monday, May 07, 2018

Safe! Caregivers Who Feel Cared For Bring Their Best Game

By Geri Lynn Baumblatt MA and Dr. Roni Zeiger

•   I feel guilty taking vacation because I know we’re understaffed right now.
•   Do I feel safe walking from the parking lot to the hospital?
•   Do I feel safe at work from injuries, falls, equipment issues…?
•   Is my job secure?
•   If I report this problem, will I get blamed for it?
•   I don’t know which is harder: taking care of patients all day at work, or caring for my sick loved one every other waking hour.

These are some examples of concerns that come up on safety culture surveys at hospitals. Caregivers and staff are often on alert or surveillance mode throughout their shifts, not just for their patients’ safety, but for their own safety and well being. In some organizations, this includes going to or coming from work: crossing through dangerous intersections on their way in.

At first, it may sound trivial – but it’s not a good way to start or end your day – dodging traffic and worrying about your own safety. While we remove carpets to reduce patient falls and add checks to ensure the right intervention is being offered to the right patient, how to we ensure our caregivers and staff feel safe?

We all know patient-centricity doesn’t work without attention to person-centricity of employees who deliver an experience where people feel safe and cared for. Sometimes the lowest hanging fruit to improve patient safety is to improve the physical and psychological well being of the caregivers. Healthcare is about relationships and complex interactions, so staff can only interact well with patients and families if they feel safe and at ease. It allows them to focus on the needs of others.

Employees are the best source of ideas
One approach: regularly survey staff with validated questions to assess strengths and weaknesses of the culture at work from their perspective. This should include open-ended questions asking for suggestions. After all, staff themselves are often the best source of ideas on how to improve the local culture. For example:

A nurse suggested that every month they celebrate a useful safety report and the person who reported it.
A physician suggested someone should be available to who staff can talk to confidentially for emotional support when they feel burned out.

While some suggestions might be on the organization’s to-do list, hearing what’s important to the caregivers can help prioritize where to start. Staff who feel cared for provide better and safer care.

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

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

Tags: communication, experience, healthcare, listening
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Posted: Wednesday, January 17, 2018

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

By By Geri Lynn Baumblatt & Shai Levi

Shai Levi

Preventive medicine is a great way to prevent and treat problems early. But there’s a problem: while clinicians recommend flu shots and screening colonoscopies and insurers often pay for them, participation rates are low.

Of course, many people don’t take part because they don’t see themselves as patients. After all, they’re generally healthy -- so why act? Behavioral-science attacks this by trying to understand and influence people’s decision-making processes:

Are people aware of the risk?
Do they understand the guidelines regarding who should get screened?
And do they have any sense of urgency to take action now?

Clinicians are in the role of medical expert. Their recommendations are influential, but it’s only part of an individual’s decision-making process. What about:

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

People don’t usually think of clinicians as experts in these topics and look to their peers. And their peers are only a click away.

A Social Network Story
At age 63, David Ron was diagnosed with colorectal cancer. Sadly, it took his life 3 years later. David created a one minute video that posted to Facebook when he passed away. In it, he talks about why he postponed screening for 13 years. He felt healthy and thought his risk for colon cancer was remote. So he didn’t see the point. Then symptoms appeared, and it was too late. He encourages people to get screened and avoid his fate.

The video (which can be viewed here) went viral. In Israel, it was adopted by organizations fighting cancer; they created Arabic, Russian and French subtitles and boosted it across Facebook. It’s been seen by over 400,000 people in the past year. Many younger people asked their parents if they’d been screened and nudged them to go. It’s hard to assess the impact on actual screenings, but initial measures showed that at least 1% of people who saw the video were motivated to get screened. And it contributed to the larger task of normalizing the conversation.

A personal story is always compelling, but most people don’t talk about their colonoscopy or stool test over drinks or dinner. However, on social networks people are more comfortable posting, commenting, “liking” and sharing about uncomfortable or controversial topics. They vocalize their opinions, get feedback from their peers and friends, and influence other people’s minds.

So, in a world where people don’t get to spend much time with their doctor and where clinician recommendations can be seen as checking a “good patient” box -- or may even be suspect as unsafe (think vaccines), people turn not just to Dr. Google, but less consciously to the their social networks. They learn if others are getting the flu shot this year, or getting colonoscopies or mammograms at age 50. They may not go online looking for this, so much as absorb it in the chatter and conversations.

Turns out, this is a big deal. Because if you come to believe an action is thought of as standard or normal in our culture (a social norm) and you believe your peers and people you respect think you should engage in a behavior (subjective norms) those both play a critical role in your decision to take action. Yep, you’re more likely to do what your friends and peers are doing. And social networks are now a major place where people get those insights.

Insights when AI meets Social Media
A network like Facebook is a good source of data. Every like, share comment, video view, and click is aggregated and segmented. Artificial Intelligence or “AI” can sift through the data and identify patterns and provide insights.

For example, the African American population has a higher risk for colon cancer and should get screened earlier, at age of 45. Yet, screening rates are low. To understand why, 30 different interventions were used to educate people about colon cancer screening and collect data on Facebook. Some were short videos of a local doctor talking about: risk of colon cancer, pros of colonoscopy, the prep, sedation, time off work, costs, etc. These were delivered to people over 45 in a geographical area (250K people fit criteria). The AI picked up a pattern revealing that young African American males in the 45-50 age range responded especially well to messages about sedation during colonoscopy and open access, which reduces time off work.

How can this help you?

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.
Consider group appointments
Conversations from peers can help normalize, reassure, and encourage others in the group to take action.

Consider how to use social networks as part of your patient engagement strategy.
Do you have a Facebook page, Twitter chats, or other social media presence? The combo of AI and social networks can lead to important insights on what people are saying and what messages resonate with various groups.

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

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

Tags: patient engagement, communication, personal healthcare, technology, experience, healthcare, listening, patient
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Posted: Wednesday, June 14, 2017

When Side Effects Get in the Way

By By Geri Lynn Baumblatt & Mia DeFino

Mia DeFino

Patients, clinicians, and healthcare organizations all want people to feel better so they can live their lives to the fullest. Unfortunately, the side effects of treatment can get in the way.

Mia’s Story: 5 meds, lots of side Effects
When first diagnosed with complex regional pain syndrome (CRPS) Mia’s physiatrist prescribed five medications. Not surprisingly, it was confusing which medication was supposed to help with what symptoms. By the time Mia came back the following week she was more miserable: agitated and unable to sleep, she had a rash on her face, and was sick to her stomach.

Turns out, she was sensitive to a lot of medications. Although she wanted to be a “good” patient, she couldn’t keep taking the meds. But her doctor was hesitant to make any changes and didn’t offer alternatives. Mia left feeling scared, frustrated and like the side effects she experienced weren’t being taken seriously.

Fast forward 3 years:
Mia was diagnosed with chronic migraines. She got relief from medication, yet it also made her dizzy, nauseous, and tired. This time the side effects conversation was different. Her neurologist worked with her through many rounds of medications and figured out if she took them as needed just on really bad days it helped her avoid the side effects, while still providing pain relief.

Geri’s story: More than a nuisance
As a family caregiver, Geri had a similar experience when medications her dad was on in the last years of his life caused his skin to thin and itch.The itching drove him crazy and kept him and those taking care of him from getting decent sleep. As a family caregiver, it was frightening to scratch his back, hoping to give him relief but not tear his fragile skin. When the family brought up the itching with his team, it was discussed as more of a nuisance -- the cost of treating his conditions.

Side effects are challenging, especially when patients take more than one medication. But even with a single medication one study that looked at statin side effects, found that 87% of patients reported telling their physician about side effects, and unfortunately physicians often rejected a possible connection to the medication. What would you do? Keep taking the medication ...or become “non-adherent”?

Changing the Conversation
It doesn’t take much to change the tone of the conversation and affirm a symptom may be due to a medication and that it’s a real issue. Even when complaints don’t fit into documented side effects, if we want people to engage in their plan of care, working this out can make all the difference to their peace of mind, quality of life (QOL), and participation. Letting people know you’ll work with them to find the right treatment where their QOL is improved builds trust.

Patients can also report side effects to the FDA on MedWatch. This can also help people know they’re contributing to a better understanding of side effects for everyone.

People want to feel better and it’s hard when treatment makes them feel worse or causes a new problem. People don’t like to challenge their care team or seem like complainers, so by the time they tell you about a side effect, it’s probably really bothering them.

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

Mia DeFino, M.S. Mia has personal experience with chronic diseases and managing her health with multiple healthcare providers, recognizing the need for translating complex ideas in medicine and healthcare for multiple audiences. She supports people dealing with complex chronic diseases through finding physicians and resources in their area. She’s an independent medical and science writer in Chicago www.miadefino.com. @mia_defino
Tags: communication, personal healthcare, family caregiver, empathy, pain management, patient education, experience, healthcare
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Posted: Tuesday, May 09, 2017

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

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

By Amy Bucher, PhD & Geri Lynn Baumblatt, MA

Amy Bucher, 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.

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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:

Virtually or in-person for the Caregiving & the Workplace Summit on June 2: https://www.caregiving.com/2017/01/save-the-date-caregiving-and-the-workplace-june-2-chicago/
At the Second Annual Patient-Provider Collaboration Conference on June 23 https://hopkinscme.cloud-cme.com/aph.aspx?P=5&EID=9864

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

Empowering Patients with a Common Language

By By Geri Lynn Baumblatt & Liz Salmi

Just one week after her 29th birthday Liz Salmi suffered a grand mal seizure and was

rushed to the ER. A CT scan of her brain showed a large mass, and after a nine-hour brain surgery she was diagnosed with a gemistocytic astrocytoma -- a slow growing, but malignant brain tumor with a high rate of recurrence.

And recur it did.

Six months after Salmi’s first surgery her tumor grew back sending her into a whirlwind of treatments over the next two years, including a second brain surgery, struggles with seizures, a rigorous schedule of physical and occupational therapy, and 24 months of chemotherapy.

Fortunately, Salmi received excellent care through her neuro-oncology nurse practitioner.

“I used to refer to her as ‘Super Awesome Nurse’ because she handled my nausea, headaches, and constipation -- all the side effects of treatment,” remembered Salmi. “She would field my daily calls and emails, tweaking and adjusting medications or suggesting simple life hacks to help me through what I was feeling.”

But Salmi never knew the kind of care she was receiving had a name until five years after she completed treatment and started working for a healthcare nonprofit advocating for access to palliative care for all people facing serious illness.

“After I took the job it took a few months for me to realize I am a person who received palliative care,” said Salmi. “At the time, I assumed the care was the result of me being lucky enough to have been paired with an amazing NP (which could still be true); but now I know the name for it is palliative care.”

Why did Super Awesome Nurse never tell Liz she was receiving palliative care? We asked her!

“While I, as the healthcare provider, may have viewed much of the care that was being rendered as palliative in nature, not all patients are ready or willing to consider that most types of brain tumor care is palliative,” said Mady Stovall, NP, former neuro-oncology nurse practitioner and current PhD student at Oregon Health and Science University.
Avoiding the term “palliative” initially is understandable. After all, there’s a lot of confusion between palliative care and hospice. And no one wants to cause panic that a condition is more serious or has suddenly become more serious.

“The perception in cancer care is that palliative care is often (and inappropriately) equated with hospice care,” explained Stovall. “Sadly, this misconception prevents many patients, families, and even healthcare providers from being able to capitalize on the expertise and resources of palliative care providers and programs. “

However, if Salmi had changed health systems or had to find a new provider, she would not have had the words to translate the care provided by this “super awesome” nurse to make sure it continued or was re-initiated as needed. She didn’t have the language to ask for that care and advocate for herself.

“Having coordinated palliative care was crucial to my quality of life because my brain tumor was causing a lot of seizure activity,” explained Salmi. “I tried seven different anti-epileptic drugs (AEDs) over five years to finally land at the right combination of medication that worked for me. Seizures are scary and make you feel as if you don’t have control over your own body. That’s why palliative care is essential; these providers listen to your concerns and fears and make sure your medical as well as emotional needs are addressed.”

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

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

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

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

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

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

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

When Frieda first began practicing as a pharmacist in managed care, she called a patient (we’ll call her “Monica”) to conduct a review of her medications. Monica was on the verge of hanging up until Frieda asked, “Have you recently been experiencing any bleeding or bruising?”

Monica paused and said, “You know, come to think of it, my gums do bleed whenever I brush my teeth. Could one of my medications be causing that?”

Frieda knew she’d recovered from what would have been an epic patient engagement fail. Instead, she used that 15 seconds to establish credibility, value, and concern, but most importantly, to get at why a medication review was meaningful for Monica. She picked a common side effect that would instantly grab Monica’s attention. Otherwise, the call might have been seen not as a service, but a nuisance — a call to update records. Or Monica may have suspected the call was gathering information to see if her insurance should keep paying for her medication. But a “medication review” didn’t immediately sound like something that would benefit her.

Articulating Value Up Front
We often assume patients and families know why we’re asking them certain questions or to do certain things: We repeatedly ask them about pain levels, tell them to avoid salt if they have heart failure, or recommend caretakers rotate bedridden patients frequently. But the value we recognize and take for granted is often not immediately obvious to patients, and that makes it even more important that we, as provider, articulate those benefits up front.

Even when a patient is admitted and we ask them to repeat and confirm information, patients often don’t see the value. Instead, the repeated questions can seem annoying or even incompetent. But opening the conversation with, “To make sure we’re keeping you safe, I’m going to re-ask you a few questions…” can shift patients' reluctance to cooperation and trust.

How can we present ourselves as approachable?
There is no cookie-cutter approach to establishing rapport. A tactic like the side effect question can quickly engage a patient who otherwise might not see a medication review as beneficial; but there are other ways.
For example, whenever a patient mentions a hobby or activity, take a few seconds to document it. At the next visit, follow up with them about that personal detail. “Last time I saw you, you were spending a lot of time in the garden; how is it looking now?” Better yet, relate it back to their health. “Last time I saw you, you were doing a lot of gardening, but your arthritis was getting in the way. How is the garden looking? Are you able to spend more time working on it now that you started the new medication?”

Reframing this question into a more insight format kills two birds with one stone. Not only can a provider further improve patient rapport by demonstrating compassion and insight, but it creates an opportunity to develop a more open and fluid dialogue. And in a world where providers are pressed for time to connect, this can go a long way.

Tags: patient engagement, communication, family caregiver, empathy, health literacy, expectations, engagement, experience, healthcare, listening, patient
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