As the Department of Veterans Affairs (VA) strives to become a leader in patient-centered care, VA-based researchers and clinicians will increasingly want and need access to the voice of Veterans. The Database of Individual Patient Experiences (DIPEx) is an innovative evidence-based methodology for eliciting rich information on the health experiences of a broad range of patients that could be leveraged as a method to enhance patient engagement and integration of patient experiences into the design and conduct of VA patient-centered research and care. Developed in 2001 by the Oxford University Health Experience Research Group (HERG), the DIPEx methodology utilizes rigorous qualitative research methods to collect and analyze interviews about patient experiences with particular health conditions. In addition to publishing findings in the peer-reviewed literature, researchers produce 'modules' or lay language summaries that describe the range of patient experiences with a given condition. Summaries are written in a balanced and accessible format for public dissemination. Interview transcripts are archived in a data warehouse and available for secondary analysis, upon request. In the UK, the DIPEx methodology is recommended by the National Health Service as the 'gold standard' for research on patient experiences. Inspired by the success of this approach, nine countries have launched their own DIPEx chapter and joined with the UK to form DIPEx International. The US is the most recent member and launched the Health Experiences Research Network (HERN), the US chapter of DIPEx, in 2014.
1) Utilize the DIPEx methodology to create a library of patient narratives related to Veteran experiences of social reintegration after traumatic brain injury (TBI).
2) Develop a repository of qualitative data on Veteran health experiences for future use by VA researchers and a web-based module with synthesized information on Veteran health experiences for public dissemination.
Per the DIPEx methodology, our project involved the following steps:
1)Interviewing a maximum variation sample of patients to capture the broadest range of health experiences; interviews continue until thematic saturation is reached (usually 30-50 interviews).
We purposefully recruited Veterans from a range of age groups, socioeconomic backgrounds, and branches of service to take part in a semi-structured open-ended interview about their experience with TBI, with a particular focus on how their injury impacted their reintegration into society. Our study population included Veterans over the age of 18 who had sustained one or more traumatic brain injuries. No demographic variables (e.g. age, sex, race/ethnicity) were used as inclusion or exclusion criteria. Recruitment venues included VA and non-VA health care facilities, newsletters, community events, and Veteran service organizations. We ensured that all participants were capable of providing informed consent and understand the risks involved in participation (which were minimal).
Interviews lasted 1-3 hours and were conducted and were conducted at a time and place that was most convenient for the interview subject. All interviews were audio and video recorded.
During the interview, we asked the patient questions about his/her experience with TBI, including how the injury occurred, the impact of the injury on his/her daily life (e.g. daily routine, work, relationships, hobbies), what was most difficult about his/her TBI, what he/she would like to be different, and how their TBI impacted their reintegration into society.
We used a two-tiered consent process. The initial consent included consent to take part in the interview and to have a de-identified transcript placed in the VA "library of patient narratives," a repository for qualitative data. De-identified transcripts are stored in the repository and available to other VA researcher upon request. After their interview, participants were also given the opportunity to consent to future use of their interview outside of the VA for non-research purposes, including the production of the module on www.healthexperiencesusa.org. This was optional; participants could decide not to consent to future use of their interview outside of the VA they could decide to make only portions of their interview available, and/or they could request to remain anonymous (e.g. by only consenting to use of audio or text clips from their interview or removing any personally identifying details).
2)Analyzing and coding interviews using a grounded theory approach, wherein researchers identify themes arising from the data.
All interviews were transcribed and entered into the NVivo software (which accommodates text, audio, and video) for coding and analysis. The research team analyzed interview transcripts, assigning codes for common and divergent themes across a range of experiences with TBI including: first signs that something was wrong; how the injury occurred; the impact of their injury on daily life; what is most challenging; their hopes for the future; and their experience of medical treatment. In addition, all transcripts were de-identified by removing any individually identifiable information. De-identified raw interview transcripts were stored in a VA narratives repository (created specifically for this study). The narratives will remain in the repository indefinitely and are available to other VA researchers and staff for secondary analysis, upon request.
3)Producing a 'module' of lay language summaries of patient experiences, illustrated with audio and video clips from actual interviews, for dissemination via a publicly available web-based resource.
The research team produced 25 summaries that describe the different themes identified during analysis of the interview data. Summaries were written in lay language and illustrated with almost 200 audio and video clips from Veteran interviews. The researchers were careful to represent the full range of Veteran experiences in the summaries, not just the most common experiences. We executed a contract with Oregon Health & Sciences University Department of Medical Informatics and Clinical Epidemiology to create the web-based module for disseminating Veteran experiences to broader audiences. With input from the research team, the contractor designed the web-based module template, managed all technical aspects of the production process, and created a manual for ongoing maintenance and trouble-shooting.
In FY2015, we recruited and interviewed 25 Veterans about their experiences of social reintegration after TBI. In FY2016, we received supplemental funding to recruit and interview 10-15 Veterans outside of the Oregon/Washington region, obtain consent for future use of interview material from those who we had already interviewed, produce lay language summaries of interview themes, and build the web-based template for public dissemination via the www.healthexperiencesusa.org website.
Step 1) Over the study period, we completed a total of 38 interviews among Veterans with TBI from several geographic locations throughout the US, including Oregon, Washington, Texas, Minnesota, Maryland, and California. The research team transcribed and coded almost 70 hours of interview material.
Step 2) Results from analysis of the TBI interviews include the following themes:
- Diagnosis/nature of the injury/early signs: Veterans reported significant variation in the time between when they starting having signs and symptoms and diagnosis. Veterans who served more recently reported a much greater awareness of TBI and its signs and symptoms. Not all were officially diagnosed, and some had more than one injury, which made it to differentiate the impact of their TBI from the other injuries and/or the mental stress they experienced throughout their deployment and reintegration.
- Ongoing symptoms/comorbidities: In addition to TBI, Veterans struggled with a number of ongoing symptoms and comorbidities including PTSD, depression, anger, and addictive behaviors, such as alcoholism and drug abuse. Veterans commonly reported struggling with memory and concentration and taking longer to perform tasks that were previously routine. Other ongoing symptoms included problems with balance, headaches, and tinnitus (ringing in their ears).
- Challenges/impact on daily life: Veterans described the challenge of having an invisible disability, being "damaged goods", issues with cognitive impairment, and the impact of the TBI on their relationships, as well as special challenges of reintegrating into society both after the military and after their injuries.
- Coping mechanisms and support: Veterans relied on both positive and negative strategies to cope with their TBI. Positive coping strategies included creating reminders on their phone in order to aid memory, adhering to a strict routine, and writing lists. Many relied heavily on family members to be their "memory" and some received emotional support from other Veterans. Negative coping strategies included drinking, drug use, self-harm, and suicide attempts. Most reported receiving either formal or support through VA services (especially mental health) or local Veteran services organizations.
- Reintegration into society: All Veterans reported difficulty reintegrating into society. Some felt isolated from and misunderstood by the civilian population. Others highlighted the difficulty of transitioning to non-military employment and accessing VA services. None of the Veterans we interviewed felt adequately prepared for this transition.
Step 3) We created 25 lay languge summaries to convey the range of experiences with TBI. Each summary illustrates specific aspects of the themes articulated above. The summaries are between 500-1000 words long and each is illustrated with 10-12 text, audio, and video clips from Veteran interviews. We also created a profile for each individual participant that includes summary details such as their age, branch of service, the nature of their injury, how they have coped with their injury, and the lessons that they would like to share with other veterans. As described above, each participant was offered the opportunity to consent to including audio and video clips from their interview in the module and had the option to remain anonymous if they so desired (in which case we omitted any personally identifying details, including photographic images). Roughly 2/3 of the participants consented to using audio and video from their interview on the web-based module. For the other 1/3 of participants, we only used de-identified text excerpts from their interviews and ensured that individually identifying details were removed from their individual profile.
We worked closely with our contractor and the HERN steering committee to create a template for dissemiating the final module on www.healthexperiencesusa.org. This included designing the user-interface and establishing a mechanism for hosting the video and audio files in a secure manner. This template will be used for all future DIPEx modules in the US.
If developed and disseminated properly, the DIPEx methodology has the potential to enhance patient engagement and amplify Veteran voices in patient-centered care and research in VA. The potential uses of this resource are described in more detail in our recent publication (Ash J, Cottrell E et al. Patient Narratives Representing Patient Voices to Inform Research. Stud Health Technol Inform. 2015; 208: 55-60).
- Ash JS, Cottrell E, Saxton L, Newman L, Gebhardt E, Helfand M. Patient narratives representing patient voices to inform research: a pilot qualitative study. Studies in health technology and informatics. 2015 Jan 1; 208:55-60.
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- Cottrell EK, Grob R, Helfand M, Pandhi N, Schlesinger M. Leveraging Health Experiences Research to Enhance Veteran Engagement. HSR&D Cyberseminars [Cyberseminar]. HSR&D. 2016 Jul 13.
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