This community-based participatory research collaboration seeks to develop and evaluate a meaningful mechanism for engaging the public, particularly minority and underserved communities, in informed deliberations about patient centered outcomes research priorities. Results of those deliberations and the tool itself could enable funders, scientists and communities to incorporate public input in research funding allocation decisions.
Aim 1: Develop content for a prioritization exercise for patient-centered outcomes research (PCOR) priorities.
Aim 2: Evaluate a deliberative exercise designed to engage minority and underserved communities in setting PCOR priorities from the perspective of the participants.
Aim 3: Describe the PCOR priorities of communities, particularly minority and underserved communities, and explore possible differences between subgroups' views and participation.
We convene 12 (6 each at UM and WashU) groups of 9-15 persons (N=144) to participate in PCOR priority-setting deliberations, oversampling minority and underserved communities and those with experience of a chronic or serious illness in the family. Substantive representation draws a range of interests into the decision-making process, paying particular attention to representing interests that are frequently overlooked, as some groups have influenced decisions all along. Emphasizing and oversampling underrepresented groups allows them to provide crucial insights that challenge prevailing assumptions. Deliberators chosen by socially rooted groups are especially valuable since they have a defined constituency to whom they are accountable, and because existing groups’ organizing capabilities can increase the political power of individuals and bring knowledge and flexibility to decision making.