Organizational, system, and policy level factors affecting dementia clinical research participation: Lessons from a pilot study

Background Finding a dementia intervention is contingent on research participation. Current literature focuses on general factors affecting dementia clinical research participation, which do not speak to specific state or local factors nor the effects of local recruitment efforts. This study identified organizational, system, and policy level factors affecting local ADRD clinical research participation in Portland, Oregon. Method A community advisory board (CAB) comprised of clinicians, researchers, advocates, people with dementia, family caregivers, and older African Americans was established for this project. Semi‐structured interviews were conducted with clinicians, advocates, and researchers. Interviews were audio‐recorded and coded; thematic analysis was used to allow themes to emerge from the data organically. The investigator was the single coder; the CAB then interpreted findings by identifying what was most important, surprising, or missing from the interviews. Result Nine clinicians, researchers, and advocates were interviewed. Interviewees were employed by or volunteered with health, research, and advocacy organizations of varying sizes and structures. Several findings emerged from the interviews. 1) Federal policy attempts to streamline research studies have not resulted in the intended outcomes at the local level. 2) People with ADRD and caregivers have a lack of awareness of research opportunities. In some cases, this was due to lack of provider knowledge; in others, it was due to organizational directives to not discuss or a provider’s personal preference. 3) Research opportunities are not shared in places where people with ADRD and their caregivers are likely to congregate. 4) Interviewees were often hesitant to join community collaborations or formal partnerships, and many were weary of including people with ADRD in their advisory boards. Conclusion Identifying how these factors affect the decision of a person with ADRD to participate in local dementia clinical research is an important first step to increasing participation rates. Based on these factors, strategies can be developed and implemented to improve the ability and motivation of people with ADRD to join research studies in the Portland metropolitan area. This study should be replicated in other communities to determine contextual relevance and generalizability for other areas. Implemented strategies should be routinely evaluated to determine their feasibility and effectiveness.