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Resources > Blogs

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: shared decision making View All Blog Posts
Posted: Tuesday, August 22, 2017

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

By Geri Lynn Baumblatt and Victoria Baskett
Victoria Baskett
Victoria Baskett

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



Victoria Baskett - Victoria Baskett is the Director of Patient Experience at Wayne UNC Health Care in Goldsboro, North Carolina. She is also the Founder and President of the Victoria Baskett Patient Safety Foundation that works to “Improve patient safety by educating patients and families on the importance of finding their voices.” Misdiagnosis, delayed diagnosis, and emergency surgery all led Victoria towards her mission to transform healthcare through patient and family advocacy and safety. Along with her career and non-profit, she currently serves on the North Carolina Quality Center Patient and Family Advisory Council and Board of Trustees, the Patient Safety Movement Handoff Communications Workgroup, and The Beryl Institute’s Global Patient and Family Advisory Council. @vbpatientsafety
Victoria Baskett Patient Safety Foundation (facebook) 
Tags: communication, personal healthcare, shared decision making, empathy, engagement, experience, listening, patient
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Posted: Saturday, October 29, 2016

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

By
The end goal of health literacy is to empower patients, families, communities and clinicians with clarity and confidence to engage in care. Here are just a few highlights from the Clarity is Power series. 
See more great articles from the 2016 Health Literacy Month Series.
 
Tags: shared decision making, family caregiver, health literacy, patient education
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Posted: Wednesday, May 25, 2016

Integrating the Whole Person Into Integrative Medicine

By

Co-author: Sangeeta Agarawal, MS, RN

Miguel is a 53 year old woman of Mexican descent. She crossed the border 25 years ago and still cherishes her culture and maintains many traditional values and ways of living. A year after being diagnosed with diabetes she arrived at the hospital with hyperglycemia and wounds that aren’t healing. She felt frustrated and helpless.  >>>
Tags: shared decision making, integrative care
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Posted: Thursday, April 28, 2016

The Motivation Equation: Creating Smarter Patients

By

Co-author: Keith Joseph, PhD

Giving instructions is a position of power; but proactively asking ourselves and colleagues whether a treatment or test is needed can help reduce overutilization. Then explaining why and having more of a shared decision making conversation can also help ensure if it’s appropriate and means patients are less likely to go home with unanswered questions.  >>>
Tags: shared decision making
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Posted: Tuesday, March 29, 2016

Engaged with Sax

By

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
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Posted: Saturday, November 28, 2015

Just the Drug Facts: Helping Patients Understand Medications

By
Catalina Gorla
Co-author Catalina Gorla (featured left) is the COO and co-founder of Informulary, Inc., a Dartmouth College spin-out that creates tools like the DrugFactsBox to help people understand what drugs can and cannot do. catalina.gorla@informulary.com  | facebook.com/informulary 


Consumer Reports magazine and Informulary - a drug data company - recently ran a series of focus groups to find out how people think about prescription drugs. They learned 3 things.

First, people strongly believe they can find all the information they need online. Unfortunately, with online medication info, if the information is free, there’s a good chance it’s marketing masquerading as fact.

Second, people also look for answers on side effects in crowd-sourced data or anonymous patient reviews. But this source is also fraught with issues – who’s really doing the rankings and why? The answers from a self-selected group of people “liking” a medicine can be very misleading.

Mainly, they learned that despite confidence in online sources, people have lots of questions and few good answers. When a patient gets a new drug, they want to know:

•    Is it safe?
•    Can it help me?
•    Is this drug worth the cost?
•    If I can’t feel the benefit, why should I keep taking it?

We know that engaging patients in a shared decision making process around the decision to start a new medication can help them understand why they’re taking it and improve adherence. But it can still be challenging for clinicians and patients to get credible answers to these questions.

The best way to get prescription drug information is the FDA itself. Before it approves a drug, FDA medical and statistical experts review all the data and make it freely available. They see all the evidence, including studies where the drug didn't work. You can learn what these independent experts think about how drug benefits and side effects stack up and what open questions remain about benefits and side effects.

FDA documents are a goldmine of information. They can be found at Drugs@FDA, and there’s a video explanation on how to use the site published in the BMJ. Unfortunately, it can be challenging to find what you’re looking for. The documents aren’t organized in a standard way and can often number in the 1,000s of pages.

A new resource, the DrugFactsBox library, summarizes the FDA information in a clinician and patient-friendly format. Developed based on years of research by Drs. Woloshin and Schwartz, professors at the Dartmouth Institute, the library is currently in beta at DrugFactsBox.co., so anyone (clinicians and patients) can freely access information on 5 medications.

Feedback on DrugFactsBox is welcomed via this form or you can contact Catalina directly at catalina.gorla@informulary.com.
Tags: patient engagement, shared decision making
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Posted: Wednesday, April 29, 2015

Meeting the Patient’s Communication Needs

By
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
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Posted: Thursday, November 20, 2014

Helping People Make Changes Beyond the Exam Room

By Scott Strange
Co-author: Scott Strange, a 2014 MedicineX ePatient Scholar has been a Type 1 diabetic since 1970. He is especially interested in removing the stigma associated with so many health issues and with mental health in particular. He blogs at Strangely Diabetic and you can find him on Twitter as @strangely_t1.

Many things can affect an individual’s ability or willingness to follow our treatment regimens. Cost, time, life, not believing it’s important, maybe not really understanding, stress, burnout, and depression to name a few.
 
Having been a Type 1 diabetic for 45 years, I sometimes need more than my annual physical may reveal. And patients in any number of chronic communities do as well. Those extra needs often directly address why I am having so much trouble being ‘compliant’, doing what I am supposed to be doing to maintain my health over the long haul, not just until my next appointment. And honestly, I might spend two or three hours a year with doctors -- leaving me up to my own devices for the other 8758.
 
But the truth of the matter is that we are rarely asked ‘why?’ and just told to do better, when what we really need is help changing our behavior. Behavior change is hard work, sometimes we’re being asked to stop doing something the way we’ve done it our entire lives. It can be done, but it’s hard to do it alone. We really need the support of our medical team.
 
Imagine being told to do better, being told that terrible complications will set in if you don’t do better, and then being made to feel guilty because we couldn’t do better. Our medical teams often don’t hear what is going on outside the exam room -- and if they do, they may often feel they can’t do anything about it. I hear too many stories of patients leaving the exam room angry, guilty, teary-eyed and thinking they’re failures.
 
Now think of that same patient who this time hears: “Here are some things we can work on” or “What can I do to make this easier?” or “How about we try this instead, what do you think?” This inclusive language can help people engage and feel less alone.

Both of you are now looking at the same problem, which is not to see a non-compliant patient or feel like a chronically ill failure.
 
The real problem is that there are forces at work influencing my behavior that my medical team doesn’t understand. And those forces can be minimized only if those of us on both ends of the stethoscope understand what they are and work together to overcome them.

As a patient I have a responsibility to work toward minimizing those forces. And my medical team has a responsibility to help me accomplish those changes and move beyond the failures.
Tags: patient engagement, shared decision making
1 comments
Posted: Friday, October 31, 2014

Confronting Health Literacy: Helping Patients Understand

By
Pain is a huge part of the patient experience. And while we can’t eliminate pain, helping patients understand how to talk about their pain, medications, and multimodal treatment can go a long way to improving what people go through both in the hospital and as they transition to home. This has been one of the themes on the Health Literacy Series. Here are a few of the highlights:
 
Another challenge is the role health literacy and patient understanding plays in both over- and under-treatment. Helping people understand and share in treatment decisions can be complex. But the more we think about the short and long term effects on quality of life, and the many human and monetary costs of inappropriate utilization, it’s worth finding ways to help patients understand:
For more like this, check out the 2014 Health Literacy Month Series: The Recap.
Tags: patient engagement, shared decision making
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Posted: Tuesday, September 30, 2014

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

By by Gonzalo Bacigalupe, EdD, MPH @bacigalupe
& Geri Lynn Baumblatt, MA @GeriLynn
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
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Posted: Wednesday, August 27, 2014

Red Light, Green Light: Helping Patients Weigh the Evidence

By by Geri Lynn Baumblatt, MA, & Casey Quinlan

Casey Quinlan, who contributed to this post, is a patient advocate, hospital medicine journalist, citizen scientist, 2013 MedX ePatient Scholar, speaker, writer, and healthcare policy wonk dedicated to putting the patient, and the patient's voice, at the center of healthcare.


Patients and families often have to wade through a flood of information about the latest in medical science. And especially when in the hospital, they often need to try to understand the pros and cons of treatments without time for research and while they’re in pain or recovering from a procedure.

Here’s a tool you can use as you partner with them to help them to understand the evidence: TheNNT.com. NNT = Number Needed to Treat.

The site uses stoplight graphics - red, yellow, and green - to show the scientific evidence of the benefit, or lack thereof, of treatments, diagnoses, and risk assessments. There’s also a black label for if the harms outweigh the benefits. The site authors are all practicing emergency medicine or critical care MDs.

For example: Cardiac defibrillation prevents death in 38% of cases where it’s used (green light all the way); Coronary bypass has no effect on 10 year survival post-heart-attack in 96% of cases (yellow light, needs more study); Aspirin to prevent a first heart attack or stroke has no benefit in 99.94% of cases (red light, don’t bother).

This is just one tool that can augment conversations and help patients and families get a better understanding, so they have fewer deer-in-the-headlights moments when facing treatment decisions.
Tags: patient engagement, shared decision making
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Posted: Monday, June 23, 2014

Strategies to Help Patients Make Medical Decisions

By Geri Lynn Baumblatt, M.A., Editorial Director at Emmi Solutions
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
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Posted: Tuesday, March 25, 2014

Inviting People to Share in Decisions

By Geri Lynn Baumblatt, M.A., Editorial Director at Emmi Solutions
Last month’s tip examined The Case of the Unfilled RX and involving people in any decisions to start a new medication. And while research shows most people want to be involved in shared decision making (SDM), they may not feel comfortable entering into this new dynamic with a clinician. After all, they may be embarrassed to voice concerns – like if they’re afraid of needles or injections.

And there are people who say they don’t want to participate in SDM. But we also know there’s no way to predict who is and isn’t interested. So the most important thing to do is ask. Even if they aren't up for SDM, everyone needs to be invited. We need to initiate it. And it may take some coaxing to get people to open up about what matters to them. After all, aren’t they supposed to be a good patient and do whatever the doctor says?

That said, I think there’s a way to invite people and help engage even those who are reticent. Try something like this:

“There’s no one perfect treatment for your condition. And there are pros and cons to all of them. So, I can tell you about the options, but I need your help to figure out which treatment is best for you. After all, whatever we choose needs to meet your goals and fit into your life and schedule, or it’s not the best option for you.”

When put this way, I think most people understand they are the ones who have the other half of the information needed to make “the right” decision.

To learn more about SDM, a free PDF of an introductory article is available here.
Tags: patient engagement, shared decision making
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Posted: Monday, December 23, 2013

Baby Steppin'

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