Series: Veteran Engagement in Research

ve-071316audio

Session date: 07/13/2016

Series: Veteran Engagement in Research

Session title: Leveraging Health Experiences to Enhance Veteran Engagement

Presenter: Erika Cottrell, Rachel Grob

This is an unedited transcript of this session. As such, it may contain omissions or errors due to sound quality or misinterpretation. For clarification or verification of any points in the transcript, please refer to the audio version posted at www.hsrd.research.va.gov/cyberseminars/catalog-archive.cfm.

Erika Cottrell: Thank you everyone for joining me today. We, are as Heidi said, going to talk a little bit more in depth about leveraging health experiences to research to enhance Veteran Engagement. This is building on a previous Cyberseminar that occurred, I think in May or June in which this Veteran _____ [00:00:19] group presented their overarching report. I will allude to that a little bit during the presentation.

We will just go onto the next slide. My name is Erika Cottrell as Heidi said. I am a research assistant professor in the Oregon Health and Science University Department of Family Medicine. I am also a researcher at the VA. I will be joined in my presentation today by Rachel Grob from the University of Wisconsin-Madison. She is affiliated both with the Department of Family Medicine and the Center for Patient Partnerships.

We would also like to acknowledge our co-authors. A few of them will be on the line for our question and answer period. Both Rachel, and I, and all of the co-authors are part of the Health Experiences Research Network steering committee. We will be talking to you about that today. All contributed to the contents of this presentation.

In particular we may – I think we do have Mark Schlesinger on the line for the question and answer period. He is a health economist from Yale University. We may also have Mark Helfand on for a bit who is from the VA and presented. He sort of led the Health Experiences Research working group, the Veteran engagement working group committee.

Just a general outline of what we are going to go through today to orient you and see where we are going. First, I wanted to just kind of give a little bit of background in patient engagement, and research. Why we care about this. Why it is important; and a little outline of the Veteran engagement working group that happened in 2015 and 2016.

Second, an overview of the DIPEx methodology for Health Experiences Research, which was part of the recommendations of this Veterans engagement working group. Third, so how we might leverage this methodology to enhance patient engagement. Then fourth, I want to talk to you about some exciting developments with respect to our ability or our network for conducting health experiences research in the U.S. I will talk to you about the launch of our DIPEx USA chapter and give you a little glimpse into to the first modules from our network, one of which is funded by the VA. It deals with health experiences of Veterans with traumatic brain injury. The other is funded by the University of Wisconsin-Madison. It looks at experiences of young adults with depression.

We will bringing Rachel Grob in to present on her implementation of the young adults with depression module. Throughout our discussion of the modules, we will sort of highlight examples and teaching points about how these experiences sort of enhance patient engagement. First of all, why do we care about this? Really, I think it boils down to if we want to conduct research that matters to patients, it is really imperative to understand what is most important from them – to really listen to them and talk to them.

This idea has gained lots of traction nationally as of late with the launch of the Patient-Centered Outcomes Research Institute, which is really committed to patient engagement as a core tenant of their research. The VA has is really calling for enhanced engagement in their activities as well. Despite the promise of patient engagement, and the attention to it, and the fact that it is really considered an essential component of a broad range of clinical and health services research, researchers frequently find it difficult to incorporate patient preferences; or their values and preferences into projects in a meaningful way.

There really are few approaches that are evidence-based. There are a lot of challenges involved in really incorporating the engagement aspects into research. I recently did a project where we interviewed a number of researchers, and a number of patient, or other stakeholders who had been engaged to sort of identify what some of those barriers and challenges were.

A number of key things stood out. One was that it is an additional cost in time. But, that is not often included in a budget of a grant. But perhaps most importantly, the skills, oftentimes needed to engage patients effectively are not the same skills that are sort of prized in our – to conduct clinical research effectively; or the basic…. Scientists may not have those same skills. These are not things that were necessarily taught in our research training.

Then finally, it can be really difficult to get a range of voices to the table. Probably the most traditional and common way of engaging patients in research is to have a patient engagement panel or advisory board. Really, by the nature of that, it can only include a handful of patients who cannot be…. There is no way that they can expect to be representing the broad range of patient perspectives.

Then in the words of one researcher I interviewed; really the value of engagement for her really depended on who was at the table that day. What their particular mix was. Different personalities are more able to share their perspectives or more willing. Some voices never get to the table due to time constraints and the ability of their work schedule to coincide with being able to be on an engagement panel; and their knowledge of such activities or just their interests.

In the end, we – not all – this can really limit the range of perspectives available. Given all of this, and really as the VA strives to become a leader in patient-centered care; the VA was really recognizing that researchers and clinicians will increasingly need and want the voice of Veterans and models of how to effectively integrate this information into research. Given this, they recently – I think it was in the fall of – in the last couple of years – convened a Veteran engagement working group to really review and recommend the best ways to incorporate Veteran input engagement into research. The overall idea that engagement could lead to improving design and uptake of patient relevant research; and increasing uptake of research into practice; and building really more Veterans support for the research we are conducting; and also restoring trust in the VA.

The working group had four subcommittees which are listed on the screen. Each of these subcommittees presented in a previous Cyberseminar. If you are interested and were not attending that one, you can go back and re-watch. We are going to talk a little bit more in depth about the second subcommittee which is the approaches to health experiences research. This committee was led by Dr. Mark Helfand and had other Working Group members who are listed on the screen.

Again, Mark presented sort of their findings and process in the previous Cyberseminar. In short, the recommendations from this working group which are listed on the screen involved really adapting some of the key features of health experiences research. But kind of the methodology that has been put forward by a group at Oxford and called the Health Experiences Research Group; who have developed a methodology that they call the Database of Individual Patient Experiences or DIPEx, which I will talk to you about later; and to really develop a public web based resources for dissemination of these experiences.

I am going to focus on those two key points in this presentation. There is also the other sort of next steps that were outlined in that working group's recommendations. But the focus group today will really be on how we can think about this health experiences research group model and developing the models for dissemination.

I will also add in too that another key point _____ [00:07:51] highlighting is it is not only disseminating through a public web based resource, but finding ways to create sort of a library, and an archive of the health experiences research that we conduct; so that it can be available for a future and secondary use by other researchers. If we can just step back for a second and think what is health experiences research?

On the right, there is a screenshot of a volume that was produced by this group of researchers, the Health Experiences Research Group at Oxford who has really sort of set the standard for this field. Then in essence, it is really just interviewing people about their experiences with particular health conditions. What is novel about this approach is it is really letting the patient take the lead and encouraging the patient to really tell their story of what has happened to them in whatever way they want to tell it; focusing on really the issues that are more important to them.

All of the interviews start off with a very open ended question and letting the patient talk for as long as they need to tell their story. Then following up with some targeting questions to kind of probe a bit deeper in different areas. The idea is that this is getting at the parts of experience that are often missing from surveys; sort of the deeper and richer experiences that are the lived experience of patients.

The Health Experiences Research Group, which was founded in 2001 by Oxford University has sort of developed this really systematic approach to doing this type of work. As I mentioned before, they call it the Database of Individual Patient Experiences, or DIPEx. Really what this means is that they have like broadened this to become this systematic collection of patient stories across a broad range of experiences with disease and illness. They have covered over 85 different topics, and done 3,000 interviews, and counting thus far.

What I think is really unique. I will say first of all, we use the term module a lot. A module is really a group of interviews on one single health condition or topic. They have done 85 modules. They have produced sort of like a mini-research study on 85 different topics. What is really unique about this is that are really our other dissemination methods I think, for one; in that traditionally research projects would be published in the peer review of academic literature and maybe presented at conferences.

But with this methodology, there is also a strong emphasis on synthesizing and disseminating materials for broader audiences. I will talk about that a little bit more as we go through. We will show you examples. Why was this created in the first place? There is lots of qualitative research that has been going on for a long time. Why did this group at Oxford feel like they needed to create DIPEx?

Really, I think it is interesting to think that and to know that some of the first people, Ann McPherson and Andrew Herxheimer were some of the founders of DIPEx in the U.K. As we have heard this story, both of those were affiliated with the Cochrane Collaboration of sort of evidence reviews and then the reviews of medical evidence. Ann McPherson was a family physician. She was diagnosed with breast cancer and was finding that she could find all sorts of information on the medical evidence; and sort of what that was telling her about her treatment and options. But very little objective unbiased information about patient experiences; and so, that is where sort of this idea was born.

Really the idea was to identify questions and problems that matter to patients; and find a way to gather that information such that it could be support and an informative resource for patients and caregivers. They have also found and it has been a great learning resource for medical students and the general public. Finally, it has had these sort of multiple secondary uses. Either the modules themselves, which are these web based dissemination modes; which we will show you examples of – have been used in teaching, and in education, and in the health system design.

Also, researchers or other professionals can request access to the raw transcripts with permission and use those for secondary analyses. Just a quick overview of how their methodology works. Really their aim when they are interviewing is to represent the broadest possible range of perspectives. They use really rigorous qualitative research methods. They are attempting to reach maximum variations such that it is sort of not so much what do most people experience. But what are all of the different types of experiences people might have? To do that, they try to look for people from a range of geographic areas, and racial ethnic background, and socioeconomic status, ages, et cetera.

For each health condition or module, researchers conducted at least _____ [00:12:35]; but really continue those interviews until they have reached saturation or the point at which no new ideas or experiences are voiced. Then all of these transcripts are coded by theme with a focus on both common and their divergent themes. In addition to producing manuscripts for the peer review literature, the themes are turned into sort of – each theme…. Or, about 25 summaries of themes will be written up for each module or health condition. These are intended to illustrate sort of the primary, the range of experiences that patients have articulated.

We collect a bunch of different single stories. It is a way of integrating all of those single stories into a larger portrait of the range of experiences that patients might have with a given condition. For each module, there are about 25 different summaries that are produced in lay language. Then they are illustrated with clips from action patient interviews. Patients are given the choice whether they want to share a video, audio, or a text clip. For each module, there are roughly 200 to 250 clips from actual patient interviews. Not the whole interview, or whatever would be on the Internet. But it is just little clips that patients have consented to.