Presentation
A Guide to Creating a Lived Experience Panel to Engage Community Members for Human Factors Professionals
DescriptionWhen designing healthcare interventions, it is vital to engage people with lived experience in the topic of interest at each step of the design process. Interventions and initiatives that emerge from collaboration between human factors/ergonomics (HF/E) professionals, including both researchers and practitioners, and patients and caregivers are more responsive to community needs and are more likely to be adopted. However, it can be challenging for HF/E professionals to partner with patient populations on research, in part due to the time commitment and in part because they may not have long-standing, trusting relationships with the patient and caregiver populations of interest. In the present work, we describe the creation and early activities of a Lived Experience Panel (LEP), a small, diverse group of advisors with lived experience in our research topic. The LEP meets quarterly for the duration of the project and is intimately involved in project decision making, from shaping recruitment materials to analyzing data to disseminating findings. HF/E professionals may use and adapt the process described below in their future work.
The research project for which we recruited our LEP focused on understanding and creating a measure of the patient work system, in particular the work system of caregivers who care for adults with chronic illness. The long-term goal of this project is to create an instrument that measures barriers and facilitators to engaging in research for caregivers. Accordingly, we sought to recruit a diverse LEP of caregivers of adults with chronic illness who are interested in advising caregiver research. Given the highly specific caregiver population, recruitment posed a challenge. In order to obtain more diverse and unfamiliar perspectives from eligible panelists, we first implemented an interest survey as opposed to directly inviting caregivers we already knew to join the LEP. The interest survey confirmed eligibility and captured both typical demographics and caregiving experiences of potential panelists. To disseminate the interest survey, we leveraged existing relationships (for example, with our researcher and community co-investigators), as well as built new relationships through direct outreach to nationwide nonprofit organizations who engage caregivers. We also drew from a registry of caregivers built and maintained by the research team over the last five years. We encouraged our dissemination partners to share the opportunity with direct contacts, but to refrain from posting it to social media, where incentivized surveys sometimes attract bots or fraudulent responses.
A total of 43 caregivers completed the interest survey in 3 weeks. To deliberately create an LEP with a broad range of experiences, we used maximum variance sampling, a form of purposeful sampling used primarily in qualitative research that allows researchers to form a diverse research sample on variables of interest. In forming our LEP, the variables of interest were demographic characteristics such as gender, race and ethnicity, education, and income; geographic characteristics, including location and rurality; caregiving experience, including years spent caregiving, living situation, relationship to care recipient, and chronic condition of care recipient; and whether the applicant had previous experience with research engagement. After the interest survey closed, we used the maximum variance sampling matrix to identify 11 caregivers to interview to join the LEP. Interviews with 11 potential panelists occurred over the course of 1 week. Interviewees to whom we did not make offers were invited to join our caregiver registry so that they could be contacted for future research opportunities and were asked if they would like to stay informed of the results of the present study.
All participants to whom we made offers accepted a position on the LEP (N=7). Although the amount of compensation was not advertised in the interest survey to prevent fraudulent responses, the amount ($500 per meeting) was disclosed in the interview so that LEP members could make an informed decision on whether to participate. It was important that caregivers’ engagement in the LEP would not create a personal financial loss, even if it required paying for respite care or taking time off from work. The final group of panelists is made up of caregivers of adults with chronic illness and is diverse across variables of interest. Four panelists (57%) have previously engaged in research; three (43%) are male; one (14%) is Asian, one is Black, one is Latino, and one is mixed race; The age range of participants is 49-61, five (71%) are between the ages of 50-59, one (14%) is over 60, and one (14%) is under 50. The panelists are also diverse in where they live: one (14%) is from a rural area, while two (29%) are suburban; four (57%) live in the Midwest, while one each (14%) lives in Pennsylvania, Georgia, and California. One (14%) has completed high school, two (29%) have completed some college, and four (57%) have completed a Master's degree. The caregivers' occupational status ranges from students to retirees, from working over 30 hours to looking for work. Panelists care for their partners, parents, aunts or uncles, and neighbors. Of the seven care recipients, three (43%) live with the caregiver, while two (29%) live in private homes and one each (14%) lives in an assisted and independent living facility.
Our LEP is integral to the current early stage of the research project. They are currently disseminating the opportunity to participate in caregiver interviews within their caregiving networks, ensuring that the breadth of recruitment is significantly broader than we as researchers can reach alone. In the next phase of our project, the LEP will add their lens to data analysis, using their lived experience as caregivers to add context and make meaning of interview data. Ultimately, the LEP will advise on how and with whom we share our findings to maximize reach and impact.
The process of creating the LEP, from drafting recruitment materials to finalizing the panel, took a total of two months. However, some of the relationships that facilitated recruitment were built over the course of years. While it is useful to engage patients as advisors at any stage of a research project, it is most impactful to integrate members of the patient population from the beginning. In the present study, the LEP will keep the caregiver voice at the forefront throughout the research process. Before the LEP was formed, our community co-investigators were involved in writing the grant. Building these long-term relationships with community members not only improves project outcomes but also strengthens researcher/patient trust that can be harnessed over time to create more relevant and effective patient safety interventions and initiatives.
The process that we describe for building an LEP to support research can be adapted to other contexts. In human factors healthcare specific contexts, LEPs can shape safer clinical workflows, create more usable and useful medical devices and health information technologies, and guide implementation of new interventions. , For example, in the design of medical devices, an LEP could illustrate the real-world contexts in which the device will be used, such as the physical environment in which device use will occur, personal characteristics that affect use, and the tacit or hidden aspects of patient workflows. Working with an LEP in the ideation and design phases means that issues are caught and opportunities identified early, cutting back on costs while maximizing uptake and impact.
The research project for which we recruited our LEP focused on understanding and creating a measure of the patient work system, in particular the work system of caregivers who care for adults with chronic illness. The long-term goal of this project is to create an instrument that measures barriers and facilitators to engaging in research for caregivers. Accordingly, we sought to recruit a diverse LEP of caregivers of adults with chronic illness who are interested in advising caregiver research. Given the highly specific caregiver population, recruitment posed a challenge. In order to obtain more diverse and unfamiliar perspectives from eligible panelists, we first implemented an interest survey as opposed to directly inviting caregivers we already knew to join the LEP. The interest survey confirmed eligibility and captured both typical demographics and caregiving experiences of potential panelists. To disseminate the interest survey, we leveraged existing relationships (for example, with our researcher and community co-investigators), as well as built new relationships through direct outreach to nationwide nonprofit organizations who engage caregivers. We also drew from a registry of caregivers built and maintained by the research team over the last five years. We encouraged our dissemination partners to share the opportunity with direct contacts, but to refrain from posting it to social media, where incentivized surveys sometimes attract bots or fraudulent responses.
A total of 43 caregivers completed the interest survey in 3 weeks. To deliberately create an LEP with a broad range of experiences, we used maximum variance sampling, a form of purposeful sampling used primarily in qualitative research that allows researchers to form a diverse research sample on variables of interest. In forming our LEP, the variables of interest were demographic characteristics such as gender, race and ethnicity, education, and income; geographic characteristics, including location and rurality; caregiving experience, including years spent caregiving, living situation, relationship to care recipient, and chronic condition of care recipient; and whether the applicant had previous experience with research engagement. After the interest survey closed, we used the maximum variance sampling matrix to identify 11 caregivers to interview to join the LEP. Interviews with 11 potential panelists occurred over the course of 1 week. Interviewees to whom we did not make offers were invited to join our caregiver registry so that they could be contacted for future research opportunities and were asked if they would like to stay informed of the results of the present study.
All participants to whom we made offers accepted a position on the LEP (N=7). Although the amount of compensation was not advertised in the interest survey to prevent fraudulent responses, the amount ($500 per meeting) was disclosed in the interview so that LEP members could make an informed decision on whether to participate. It was important that caregivers’ engagement in the LEP would not create a personal financial loss, even if it required paying for respite care or taking time off from work. The final group of panelists is made up of caregivers of adults with chronic illness and is diverse across variables of interest. Four panelists (57%) have previously engaged in research; three (43%) are male; one (14%) is Asian, one is Black, one is Latino, and one is mixed race; The age range of participants is 49-61, five (71%) are between the ages of 50-59, one (14%) is over 60, and one (14%) is under 50. The panelists are also diverse in where they live: one (14%) is from a rural area, while two (29%) are suburban; four (57%) live in the Midwest, while one each (14%) lives in Pennsylvania, Georgia, and California. One (14%) has completed high school, two (29%) have completed some college, and four (57%) have completed a Master's degree. The caregivers' occupational status ranges from students to retirees, from working over 30 hours to looking for work. Panelists care for their partners, parents, aunts or uncles, and neighbors. Of the seven care recipients, three (43%) live with the caregiver, while two (29%) live in private homes and one each (14%) lives in an assisted and independent living facility.
Our LEP is integral to the current early stage of the research project. They are currently disseminating the opportunity to participate in caregiver interviews within their caregiving networks, ensuring that the breadth of recruitment is significantly broader than we as researchers can reach alone. In the next phase of our project, the LEP will add their lens to data analysis, using their lived experience as caregivers to add context and make meaning of interview data. Ultimately, the LEP will advise on how and with whom we share our findings to maximize reach and impact.
The process of creating the LEP, from drafting recruitment materials to finalizing the panel, took a total of two months. However, some of the relationships that facilitated recruitment were built over the course of years. While it is useful to engage patients as advisors at any stage of a research project, it is most impactful to integrate members of the patient population from the beginning. In the present study, the LEP will keep the caregiver voice at the forefront throughout the research process. Before the LEP was formed, our community co-investigators were involved in writing the grant. Building these long-term relationships with community members not only improves project outcomes but also strengthens researcher/patient trust that can be harnessed over time to create more relevant and effective patient safety interventions and initiatives.
The process that we describe for building an LEP to support research can be adapted to other contexts. In human factors healthcare specific contexts, LEPs can shape safer clinical workflows, create more usable and useful medical devices and health information technologies, and guide implementation of new interventions. , For example, in the design of medical devices, an LEP could illustrate the real-world contexts in which the device will be used, such as the physical environment in which device use will occur, personal characteristics that affect use, and the tacit or hidden aspects of patient workflows. Working with an LEP in the ideation and design phases means that issues are caught and opportunities identified early, cutting back on costs while maximizing uptake and impact.
Authors
Clinical and Translational Research Coordinator
Founder of Monarch Dementia Caregiver Services, LLC. & Professional Care Manager
Principal, Articulations Consulting and Head of Patient Education, Rush University Medical Center
Event Type
Oral Presentations
TimeMonday, March 2310:52am - 11:15am EDT
LocationMurray Hill East
Patient Safety Research and Initiatives