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Patient Engagement Tip of the Month

  Geri Lynn Baumblatt

Geri Lynn Baumblatt, M.A., is the Executive Director of Patient Engagment at Emmi Solutions where she oversees the creation of multimedia patient engagement, education, shared decision-making, and behavior change Emmi programs and interactive phone calls. She also hosts an annual October Health Literacy Month blog series for Engaging the Patient. She regularly speaks and serves on health literacy and shared decision making panels for organizations like AHRQ, the Institute for Healthcare Advancement, Health Literacy Missouri, and the Center for Plain Language. Emmi Solutions works with decision scientists, behavior change experts, patients, and clinicians; they draw on their research and experience to create content that helps patients engage in their care.



Posted: Tuesday, September 30, 2014

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

By Geri Lynn Baumblatt, Executive Director of Patient Engagement, Emmi Solutions
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 Geri Lynn Baumblatt, Executive Director of Patient Engagement, Emmi Solutions

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: Thursday, July 31, 2014

“Be prepared” is more than a catchy boy scout motto, it’s good patient care

By Geri Lynn Baumblatt, Executive Director of Patient Engagement, Emmi Solutions

Stuart S.W. Grande, who contributed to this post, is a post-doctoral research fellow in shared decision-making at the Dartmouth Center for Health Care Delivery Science, interested in the value of new technologies for enhancing the patient voice (patient engagement).

A surprise party can be exhilarating, but waking up from surgery and finding out you can’t drive for 2 to 6 weeks is not. But that’s what happens to many women who are uninformed about recovering from a scheduled C-section. Other women panic when their belly swells up after an abdominal hysterectomy, something they should know to expect, but sometimes aren’t told about.

Setting expectations about recovery doesn’t just help patients prepare, it reduces their stress. After all, when people know to expect things like pain, they usually tolerate it better. And knowing it’s normal for something to look bruised, oozy, and scary can help reduce late-night panicky calls. More importantly, they have a better sense of when something is wrong and should call.

Patients can also be more activated to participate in their recovery. For example, sometimes, like after orthopedic surgery, patients aren’t told about the potential weight gain that comes from being less mobile. While obvious to clinicians, patients often don’t consider weight gain as a side effect. For many athletes, returning to the field of play is painful and hard with no guarantee. In these situations, gaining a few pounds makes recovery feel much worse.

Of course there’s a lot we can do to help set expectations. Be specific, practical, and honest about what they’re going to see and feel. Is something going to look really bruised and upsetting? While discharge may look like normal healing to a clinician, it can be frightening and challenging for people who aren’t used to seeing it, especially on their own body.

When people know what to expect after a medical intervention they can plan and prepare. Caring for them like it was the first time, your patients will be grateful.
 


Tags: patient engagement
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Posted: Monday, June 23, 2014

Strategies to Help Patients Make Medical Decisions

By Geri Lynn Baumblatt, Executive Director of Patient Engagement, 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, personal healthcare, shared decision making
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Posted: Wednesday, May 28, 2014

When Caring for the Family Reduces Patient Stress

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

Tags: patient engagement, communication, family caregiver
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Posted: Monday, April 21, 2014

Looking Out for Family Caregivers

By Geri Lynn Baumblatt, Executive Director of Patient Engagement, Emmi Solutions
A hospital out west recently surveyed people with pancreatic cancer and their family caregivers about their emotional highs and lows over the course of treatment. While the graph of the patients’ emotions looked like a fairly intense rollercoaster ride, the graph of their family caregivers' emotions actually showed higher highs and lower lows.
 
To understate the obvious, family caregivers take on a lot -- not just the physical care, but the emotional stress. And, as this small survey showed, caregivers may actually experience more hope when things go well and more stress and depression when they don’t.
 
More and more hospitals have started offering caregiver classes to try to prevent burnout and help prepare people for what lies ahead. Family caregivers often don't realize what they're taking on and how it will affect their social, emotional, and even physical health. At first, it's sometimes hard to see that it can quickly become a challenge just to leave the house for a few hours to run errands or get a good night's sleep, let alone deal with any mood swings or memory or dementia issues.

These types of caregiver classes can also serve as social support and a way for them to meet others to talk with. What is your hospital doing to help prepare family caregivers so they don't end up a casualty of caregiving?

Tags: family caregiver
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Posted: Tuesday, March 25, 2014

Inviting People to Share in Decisions

By Geri Lynn Baumblatt, Executive Director of Patient Engagement, 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, personal healthcare, shared decision making
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Posted: Monday, February 24, 2014

The Case of the Unfilled Rx

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

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

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


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

Helping Patients Understand the Big Picture

By Geri Lynn Baumblatt, Executive Director of Patient Engagement, 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
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Posted: Monday, December 23, 2013

Baby Steppin'

By Geri Lynn Baumblatt, Executive Director of Patient Engagement, 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, doctor's appointment, shared decision making
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Posted: Wednesday, November 20, 2013

Don't Forget "The Why"

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

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

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

Tags: communication
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Posted: Wednesday, October 23, 2013

Talk About Myths

By Geri Lynn Baumblatt, Executive Director of Patient Engagement, Emmi Solutions
Big foot and the Loch Ness Monster aside, there are lots of myths and half-truths floating around healthcare. After all, if you’re breastfeeding there’s no possible way you can get pregnant, right?

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

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

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

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

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

Be Psychic

By Geri Lynn Baumblatt, Executive Director of Patient Engagement, Emmi Solutions
That’s right, when telling people about a procedure or a new diagnosis, it helps to be a little bit psychic. To be fair, you don’t actually have to be psychic, so much as seem psychic.

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

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

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

Tags: patient engagement, communication, doctor's appointment
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