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Here's the story: Studies bank on power of personal narratives to inform research, improve care

March 19, 2015

Dennis Temple (center), an Air Force Veteran and IT specialist at the Birmingham VA Medical Center, chats with Dr. Jasvinder Singh as the team tests a videotaping set-up. (Photo by Joe DeSciose)

Dennis Temple (center), an Air Force Veteran and IT specialist at the Birmingham VA Medical Center, chats with Dr. Jasvinder Singh as the team tests a videotaping set-up. (Photo by Joe DeSciose)

Journalists and marketers have long used people's personal stories to get their point across. Now, health researchers are tapping into the same power.

Two VA studies now underway—one based in Oregon, the other in Alabama and Pennsylvania—reflect a growing trend, in and outside VA.

The first project seeks to create a databank of patient stories for use by VA researchers. The stories, presented in a different format, will likely also find an audience among clinicians and patients.

The other study aims to produce educational videos to help Veterans and others with chronic disease better manage their conditions—for example, by motivating them to stick with their medications.

In both cases, patients take center stage. The idea is that by simply sharing their stories, they can teach, inspire, and motivate other patients, as well as provide insights and lessons for health providers and researchers.

Portland researchers Dr. Erika Cottrell (left) and Lauren Saxton conduct an interview in connection with a TBI narratives project. (Photo by Michael Moody)

Portland researchers Dr. Erika Cottrell (left) and Lauren Saxton conduct an interview in connection with a TBI narratives project. (Photo by Michael Moody)

Capturing those stories in the right way, though, takes "careful, systematic methods," says Dr. David Atkins, VA's director of Health Services Research and Development. His program has funded the two studies featured below, as well as others focused on patient narratives.

Atkins says patient narratives are a key driver of patient-centered care, which VA has increasingly stressed in recent years.

"Delivering patient-centered care requires putting the patient rather than the clinician at the center of the care process," says Atkins, who earlier in his career was a primary care doctor. "Despite our best intentions as clinicians, really listening to our patients is made harder by crammed office schedules, demands of the electronic health record, and complicated diagnostic and treatment regimens. Patient narratives capture how patients experience their particular illnesses. They are a way to amplify the voice of the patient."

From a research standpoint, says Atkins, "good narratives can help us understand what outcomes to consider in research, how to measure quality care, and how to design educational messages that communicate effectively to patients."

Inspiration from UK

Dr. Mark Helfand and his group at the Portland VA Health Care System are collecting narratives from Veterans with traumatic brain injury (TBI). Eventually, they hope to move on to other topics, or modules. The main target audience will be VA researchers, but the team envisions several other purposes for the material.

The project follows a pilot in which the team queried other VA researchers about their needs, and then interviewed and videotaped 11 Veterans with diabetes or TBI. They described that effort in Studies in Health Technology and Informatics. Their conclusion: "We found that it is not only feasible to provide researchers with patient narratives that could help guide their research, but that similar narratives might be useful to practitioners, health system decision makers, and other patients as well."

The diabetes and TBI pilot grew out of earlier work by Helfand with the nonprofit Patient-Centered Outcomes Research Institute, created as part of the Affordable Care Act of 2010. His mission was to find ways to inject patient perspectives into research.

Helfand's associate Lauren Saxton reviewed a few existing resources that featured patient stories. One in particular that caught her eye was the United Kingdom website, the product of a partnership between University of Oxford researchers and a charity called DIPEx.

As the name suggests, the site features people talking about their health. It has an A-to-Z list of health conditions. Each has a breakdown and quick summaries of common themes related to the ailment, and video clips of real people describing their experiences.

"This is just what we need,"Saxton said to Helfand. "Why don't we have something like this in this country?"

Helfand was hooked. The DIPEx format would serve as a model for his group.

Researchers at the University of Wisconsin-Madison saw the same need and applied for a DIPEx chapter in the U.S. They've since received funding for the first DIPEx module in the U.S., focused on young adult depression. And Helfand and Cottrell, both with VA and Oregon Health and Science University, have joined with them, and with a group at Johns Hopkins University, to form DIPEx U.S.A.

Synthesizing raw data into final products

Helfand explains how the Oxford researchers' work was transformed into the content on, and how his group plans to take a similar approach with their Veteran interviews:

"The researchers take the themes they derive from all the interviews and find a way to get that across without having giant chunks of transcripts or hours of videos. Rather, they have smaller bits of video and bits of text that illustrate key themes."

Therein lie the art and science of qualitative health research.

"You go through a rigorous analysis of all the data,"says Dr. Erika Cottrell, Helfand's colleague and lead investigator on the TBI study. "You interview until you reach 'saturation'"—meaning the same themes start to reappear and few new ones are emerging, a sign that the interviews, collectively, have pretty much covered all the bases. "You also try to interview a maximum variation sample of patients so that the interviews represent a wide variety of Veteran experiences—not just the most common experience. Then you look across the interviews to identify high-level themes. You write up summaries of those themes that are illustrated with bits of the interviews. These could be video or audio, or even just bits of transcript."

Importantly, says Cottrell, "you're never putting out a raw transcript or an entire video of an interview from one person. There may be bits of their interview with a description of what the group of subjects in general said about a given condition. It's really distilled. You're not just looking at one interview after another."

In a way, it's almost like creating a documentary film, featuring snippets of interviews skillfully woven in with other material, all of which together tells the story. The difference here is that users can navigate amid a wide menu of segments and themes, choosing those that interest them and meet their needs.

One format for researchers, another for public

Using this overall approach, the Portland researchers aim to develop two final products. One would be a repository of narratives available only internally, to VA researchers. There'd be some type of informatics-based index system—probably based on medical keywords. Some researchers might want only the high-level summaries, or perhaps searchable text transcripts. But the full raw, uncut video would also be available, as that might suit other research needs.

Cottrell: "A researcher may be looking for different things that are not captured in the summaries or even in the full transcripts. So seeing the raw video can be useful in some cases, versus looking at a synthesized piece. You're getting the feel of someone, instead of just seeing their words on paper. There's a richness you can get."

The other final product would be geared to Veteran patients. Here, no raw, uncut videos would be available. "Anything we'd do for the public would be more 'digested,'"says Cottrell.

Helfand says these techniques for gathering and processing interviews—taking a representative sample of a patient population, analyzing and coding the themes they talk about, and distilling it all together—are routine in qualitative health research. What's different here is the dissemination.

"In most cases, a study like this will end with a journal article,"seen by only a very narrow audience of other researchers. "One of the things DIPEx has done so beautifully is say, what about making this available to other audiences?"

Moreover, he adds, researchers often gather lots of interesting material that never sees the light of day even in scientific journal articles: for example, open-ended comments from surveys or focus groups.

"Generally, there's no mechanism to circulate that and make it available to the public," he says.

Narratives and summaries can serve many purposes

Helfand likes the idea that once the initial heavy lifting is done by the research team, the fruits of their labor can serve many purposes.

The original U.K. site draws lots of traffic, including many U.S. users. "People are using it a lot, which shows there's a demand for this type of resource," says Cottrell.

Britain's national health system has turned to the site to help develop clinical guidelines. Hospitals from London to Liverpool have used the patient narratives to help redesign how they deliver care. Doctors refer newly diagnosed patients to the site so they can see how others cope with the disease.

"It's patient information that's not created by a drug company,"notes Cottrell. "It's giving you other perspectives."

Helfand's team feels strongly that because health care on the "other side of the pond"is different than what Americans know, it's an important to have a U.S. version of the site. Moreover, U.S. Veterans have a unique experience all their own.

The focus of the Portland team for now is TBI. They are recruiting Veteran participants from a variety of sources within VA and the community. One, for example, is nearby Portland State University, which has many Veteran students. Another is mutual recruitment with a TBI study: Those researchers are asking their study volunteers if they want to take part in the narrative project, and vice versa.

'Very willing to share their stories'

The response so far has been good, says Cottrell. "When we've talked about the idea of creating a public-facing resource, most people we've worked with seem excited by that idea and are very willing to share their stories."

Veterans get to choose how much of their taped interviews they want out in the public. Some may want only audio or an anonymous text transcript, and no video. Others, says Cottrell, "are happy to have their face out there. They feel it's an important thing for them to do."

Going forward, the researchers envision a series of modules. Some might be on other health conditions. PTSD is a likely candidate for the Veteran population; Cottrell says she greatly admires what VA's National Center for PTSD has already done with its AboutFace project—she calls it an "amazing site"—and suggests there might be opportunities to collaborate with that project and adapt some of its material for the DIPEx framework.

Besides health conditions, modules could also focus on different aspects of the VA experience: being a patient in a VA emergency room or in an intensive care unit, for instance. Or, suggests Cottrell, "How about reintegration into society after deployment, regardless of the specific health conditions the person has?"

All in all, says Helfand, "What's really neat is all the secondary uses that come from the data. You do all these interviews, you create this resource for researchers or for patients, but it doesn't just stop there. It lives on and people can use the data again and again, for any number of purposes."

Gout: Can patient stories boost medication adherence?

Meanwhile, 2,000 miles away, Dr. Jasvinder Singh at the Birmingham (Ala.) VA Medical Center is drawing on some of the same methods to help Veterans with chronic disease, starting with gout among African American men—a group at relatively high risk for the disease.

A form of arthritis, gout can involve anguishing joint pain. But most patients get flare-ups only very occasionally, especially in the early phases of the disease. "People may go months or sometimes even years without having any significant symptoms,"says Singh, an internist, rheumatologist, and health services researcher.

As a result, patients tend to not stick with long-term drug regimens designed to keep uric acid levels in check and prevent flare-ups.

Singh cites a study that compared patient adherence to medication for chronic diseases. Gout was at the bottom of the list. Hypertension, in contrast, was much higher.

"A patient with gout may get only two or three attacks in a five-year period in the beginning,"says Singh. "So they think, why do I need to take a drug for something that happens so infrequently? A lot of patients have a hard time coming to grips with that. And they do seem to have a good argument: They feel the same whether they take the medication or not, at least in the short run. But the attacks become more frequent as time goes by, and without treatment this has a negative impact on their quality of life. They don't make the connection that they can go months or years without an attack when they stick with the medication."

High blood pressure, while dangerous, has no obvious symptoms—hence its reputation as a "silent killer."But nonetheless, patients associate it with stroke, heart attack, and death, says Singh. That ups their motivation to take the drugs. Gout may be painful, but not deadly, patients think. They don't have the same fear. What they may not realize, says Singh, is that gout also raises the risk of serious cardiac problems and death.

"We've done studies where people have told us clearly, if it comes to a choice between taking their blood pressure medication or their gout medication, because they don't have enough money for both, they will always choose the blood pressure medication. Why? Because hypertension can kill them, while gout is just a nuisance. That's the thought process."

So what's a doctor to do? Singh's idea: Harness the power of patient stories.

"Anytime patients can share and learn from each other, they're better off,"he says. "Physicians just telling patients to take their medications—telling them that if they don't take them, they'll end up with joint deformities, disabling pain, a reduction in their mobility and quality of life—that doesn't work. It's not a good way to motivate a patient."

Covering the 'depth and breadth' of patients' experiences

His team's first step was interviewing a few dozen African American Veterans with gout, trying to get at what helped or hurt their adherence to drug regimens. Next, he chose a handful of the Veterans to be videotaped. These were the "storytelling stars,"he says—the ones who were the most eloquent and persuasive.

Now, the researchers are carefully analyzing the content, with an eye toward producing a dynamic patient education video.

Even though the patients in the project are a relatively homogeneous group—African American male Veterans—there are still a variety of themes Singh hopes to capture, to effectively connect with viewers.

"As we look through the clips," says Singh, "we want to identify patients with different symptom frequency or severity, and different barriers or facilitators to taking their medications regularly. We hope to have a product that covers enough of the depth and breadth of patients' experiences with these medications so that patients from different walks of life and with different histories can relate to some of the stories they hear. That's one reason we collected these stories in two parts of the country [Birmingham and Philadelphia] where there could potentially be some cultural differences."

A low-cost option for patient education

The plan is that Veterans will view the video on an iPad or PC at home, or at a kiosk at their VA medical center or clinic. It's a low-cost option for patient education that doesn't rely on medical staff, says Singh.

"When a patient is sitting in the waiting room, there's no point in watching the same Oprah show you've already seen twice,"he quips. "I'm sure a lot of Veterans would like the option to watch, instead, something they can learn from and that can help them."

He envisions users being able to view core content—containing key educational messages about the disease—and click on particular patient stories they find especially relevant.

"Patients might want to learn more about a particular theme, or see a few more stories from younger patients, or older ones. Or a particular type of situation—say, someone who's not married and is living alone."

Another way to organize the content might be offering a link with the header "my biggest barrier is…"followed by a few choices. One of the researchers' tasks as they analyze the raw video content is breaking Veterans' barriers down into major categories, or "domains."

The overarching theme Singh wants to highlight is how Veterans with gout overcame obstacles.

"Some parts of the final video will be Veterans telling other Veterans that gout is a condition that matters, that it's affecting their lifestyle. They'll be talking about what they can and can't do. They'll also get across the point that it's an easily controllable condition, with medications that are available and very affordable. We hope this will motivate Veterans who view the video. They'll see what helped their fellow Veterans succeed with what they find challenging."

The next steps involve testing different versions of the content with focus groups at the Birmingham and Philadelphia VA medical centers, and producing the final video.

Whatever the final form, it will rely squarely on Veteran input.

"We have intentionally tried to not put physician components into this," says Singh. "We want to keep it for patients, by patients."

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