Priorities for Patient-Centered Outcomes Research: The Views of Minority and Underserved Communities
For which topic were research priorities identified?
In which location was the research priority setting conducted?
North America - USA
Why was it conducted at all?
To educate and engage diverse members of the public in priority setting for PCOR, we adapted an existing deliberation exercise, CHAT (originally Choosing Health Plans Altogether, now CHoosing All Together), to facilitate deliberative priority setting constrained by limited resources.
What was the objective?
to learn how minority and underserved communities would set priorities for patient-centered outcomes research
What was the outcome?
a ranking list of 13 research topics
How long did the research prioritization take?
No information provided.
Which methods were used to identify research priorities?
focus group; interview
How were the priorities for research identified exactly?
Step 1: generating research priorities by reviewing literature and interviewing community leaders, clinicians, and key informants. Step 2: 16 focus groups: deliberation event starting with a brief video describing what research is, how it is funded, and who currently decides what research questions are asked and then participants were asked to play: CHoosing All Together (CHAT): CHAT presents participants with an interactive, online game board that resembles a pie chart, each wedge of the circle represents a category of PCOR spending, and each wedge has different levels of spending (including the option of no spending at all), participants choose the level of funding for each category by allocating markers: participants first set priorities as individuals, then in groups of 2-4, then with the entire group (up to 16), and repeated individual choices at the end, during exercise group heard and discussed scenarios that illustrated the consequences of the priorities they chose, scenarios were developed based on real-life events and vetted by community leaders, researchers, and leaders of research institutions.
Which stakeholders took part?
Minority and medically underserved communities. Interviews: community leaders, clinicians, and key informants. Focus groups: 183 participants.
How were stakeholders recruited?
Participants were recruited in minority and underserved communities in Michigan and Missouri using flyers and local advertising in English and Spanish, and through personal contacts. Volunteers were excluded if they were health care professionals or researchers, or under 18.
Were stakeholders actively involved or did they just participate?
Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.