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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: health literacy View All Blog Posts

Posted: Monday, March 20, 2017

Empowering Patients with a Common Language

By By Geri Lynn Baumblatt & Liz Salmi

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

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

And recur it did.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tags: patient engagement, communication, family caregiver, empathy, health literacy, expectations, engagement, experience, healthcare, listening, patient
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Posted: Saturday, October 29, 2016

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

The end goal of health literacy is to empower patients, families, communities and clinicians with clarity and confidence to engage in care. Here are just a few highlights from the Clarity is Power series.

ePatient Dave set the stage with Clarity is Power!
Dr. Erica Spatz & Andi Shahu looked at addressing The Medication Creep.
Dani Alcorn looks at the art of medical art and illustration to empower patients with clarity.
Clarity to empower better advance care planning from a patient/family POV & a Palliative physician's insights
I look at an approach to Empower Communities with the Bigger Picture

See more great articles from the 2016 Health Literacy Month Series.

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

A Clear Path to Better Recovery

By Emily Azari with Dr. Elizabeth Wick

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

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

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

Co-author: Don Rubin, PhD

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

Tags: communication, health literacy
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Posted: Monday, October 26, 2015

Narrating Change: People Can’t Be Motivated by What They Don’t Know

Burn gel relieves pain on contact. You can see a cut or scrape start to heal over the course of a week. And when a medication helps us feel better, we’re motivated to keep taking it. When change happens quickly, it’s easy for people to see or feel the change and be motivated. But it’s much harder to be motivated by small, incremental changes we don’t notice.

When a car accident in grad school landed me in long-term physical therapy, at first there were real milestones: removing the sling, stiffness in my neck noticeably improved, but then I felt like I hit a wall. Was the physical therapy doing anything? Small comments from various therapists about improvements they would notice and narrate when they saw me a week or two later really made a difference to my psychology to keep going.

In Annette McKinnon’s article on becoming a more engaged and health literate patient as she learned to cope with rheumatoid arthritis, she explains how a turning point came for her when her trusted physical therapist convinced her to persist with one easy exercise as part of her daily routine. The moment that made such a difference was a simple comment by a new specialist. During a routine trial assessment he commented, “You have good muscle tone in your abs.”

As Annette explains, “This amazed me. After 15 years with sore feet and hands and very little exercise, making an effort to do one small exercise actually made a difference. The fact the doctor was a specialist who saw many people with RA gave the comment even more impact. For her it was a mere observation, but for me this information was new motivation. I redoubled my efforts to change for the better and be more active, and started learning Arthro-Pilates.”

Narrating these small changes for patients can have profound effects. Sometimes it’s done during a physical exam, or it can be narrated as notes are entered in the medical record. How are you helping people recognize incremental improvements?

October Health Literacy Month Blog Series

Check out articles by:

Patients, like Randi & Gary Oster, on the transition from pediatric to adolescent/adult care.
Family caregivers, like Regina Holliday, on transitioning her husband from hospital to at-home hospice.
Thought leaders, like Carol Levine, on health literacy and palliative care.
Health literacy researchers, like Michael Paasche-Orlow, on the role it plays in care transitions.
Physicians, like Dr. Joseph Geskey, who writes about the challenges of transitioning his own father from hospital to home.
And patient engagement designers, like Emily Azari, on Transitioning to caring for an Ostomy

To view links to all the articles in this year’s series on health literacy and transitions, visit EngagingThePatient.

Tags: patient engagement, health literacy
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Posted: Monday, January 27, 2014

Helping Patients Understand the Big Picture

By Geri Lynn Baumblatt, M.A., Editorial Director at Emmi Solutions

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
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