Results Summary
PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.
Background
Patient-centered outcomes research should take into account patients’ opinions about what research topics are important to them as well as their health goals. When patients help to decide the focus of research, researchers can get a better understanding of what matters to patients and do research that more closely matches patients’ needs.
Project Purpose
Researchers worked with community members to test a way of asking people what types of research they think are most important. This study had four goals:
- Create a list of potential research topics for groups of people to learn about and then decide which ones they think are most important.
- Test a method of public discussion designed to help people think in-depth about research topics.
- Use the results of the discussion to identify what people think are the most important research topics and see if different people with different characteristics had different opinions.
- See how useful the results of the discussion are for the people who participated, the community as a whole, and for researchers.
Methods
The researchers used public deliberation, a type of guided discussion in which groups of people listen to the thoughts, ideas, and values of others and share their own thoughts on the topic. Researchers asked community leaders and doctors to help them make a list of possible research projects that these groups could discuss.
The research team held 16 discussion groups in Spanish and English for 183 people from cities and rural areas in Michigan and Missouri. Most of the participants were from a racial or ethnic minority group, and about one in three participants made less than $10,000 a year. About one in four participants said they were in fair or poor health.
During the group discussions, people talked about what types of research they thought were most important. They also did an exercise where they decided how much research money they would give to each research topic.
The researchers gave participants a survey before and after the study that asked
- What kinds of healthcare research they thought were most important
- How much they knew about healthcare research
- What they thought about healthcare research
Participants also filled out a survey after the discussion that asked what they thought about this type of group discussion. The researchers looked at whether participants with different characteristics chose different research priorities and if participants answered the survey differently before and after the group discussions.
Findings
Participants thought it was most important for research to focus on five areas:
- Quality of life
- How doctors and patients work together
- Helping people get the care they need
- Helping people with special needs
- Comparing different ways to treat a health condition
Most participants agreed about these five areas, no matter their gender, ethnicity, income, where they lived, or whether or not they had health problems. Young adults were more likely than participants age 70 and older to say it was important to do research about people who have multiple health problems or do research about families and caregivers.
After the group discussion, some participants answered the survey questions differently than they had before. They were more likely to pick these research areas as important:
- Comparing different ways to treat a health condition
- Helping people with special needs
- Helping people get the care they need
- Helping families and caregivers
When asked about the group discussions
- Nearly all participants (more than 9 out of 10) said that everyone’s opinions got equal respect during discussions.
- More than half of participants (about 6 out of 10) said that they would trust decisions that come from group discussions like this about what kind of research should get funding.
- Most participants (about three out of four) said that the way the group made decisions was fair to everyone in the group and that they learned about opinions that were different from their own.
- About one out of four participants said there wasn’t enough time for discussion.
Limitations
People who are interested in taking part in this kind of study might have different views than the general population. The researchers only included participants from two states. The results may not be the same for people who live in other states.
Conclusions
Participants thought that this type of group discussion was a fair way to make choices about research priorities. Most participants said they would trust the results from the discussion to help decide which research projects should receive top priority. This type of group discussion could be used by other organizations to decide what to focus on in healthcare research.
Sharing the Results
The researchers presented their findings at professional conferences and in articles in health research journals.
Professional Abstract
PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.
Background
Engaging patients and healthcare consumers in helping to set research priorities can illuminate and inform decisions and make the Patient-Centered Outcomes Research (PCOR) agenda more just, accountable, and responsive to the needs of patients and consumers.
Project Purpose
In this study, academic-community partnerships used a community-based participatory research (CBPR) approach to develop and test a method for engaging minority and underserved communities in informed deliberations about PCOR priorities.
The study had four aims:
- Aim 1: Develop content for a prioritization exercise for PCOR priorities.
- Aim 2: Evaluate a deliberative exercise designed to engage the public in setting PCOR priorities from the perspective of participants.
- Aim 3: Describe the PCOR priorities of communities, particularly minority and underserved communities, and explore possible differences between subgroups’ views and participation.
- Aim 4: Assess the value of reports of public deliberation and priorities for participants, communities, research institutions, and funders.
Study Design
Academic–community partners adapted the simulation exercise called Choosing All Together (CHAT) for informed deliberations about PCOR priorities. The “menu” of spending options was developed based on existing PCOR research agendas and interviews with community leaders, clinicians, and key informants. After training, community partners facilitated CHAT sessions. Researchers used mixed methods to understand participants’ experiences with and perceptions of the deliberation and the effect of participation on knowledge and attitudes toward PCOR.
Participants, Interventions, Settings, and Outcomes
Sixteen groups (n = 183) from minority and underserved communities deliberated about PCOR priorities in English or Spanish. Most participants (65.6 percent) were minorities, one-third reported income <$10,000, and one-quarter reported fair or poor health.
Settings were minority and underserved communities, both urban and rural, in Michigan and Missouri.
Pre- and post-deliberation surveys measured participants’ characteristics and their experiences with deliberations. Priorities selected by individuals before and after deliberation, and by groups, were collected during the tablet-based exercise.
Data Sources
Surveys, participants’ priority selections, and audio-recorded group dialogue
Data Analysis
Researchers conducted three main analyses:
- Descriptive statistics of participants characteristics, experiences with deliberations, and priority selections
- Multilevel logistic regression, with groups as random intercepts, to obtain estimates for independent associations between each priority selection and both various individual-level (e.g., age) and group-level characteristics (e.g., urban vs. rural)
- A grounded theory approach to qualitatively analyze data from deliberations. Multiple coders and validation by community partners enhanced reliability of interpretation.
Findings
Individuals and groups prioritized research on quality of life, patient–doctor relations, access, special needs, and comparing approaches. Participants over 70 years old were less likely to prioritize research on multiple conditions and families and caregivers than young adults. We found no significant relationship between priorities selected and participants’ gender, rural vs. urban residence, ethnicity, income, or health status. Four categories of research priorities—compare approaches, special needs, access, and families and caregivers—were selected more often by individuals after group deliberation than they were before deliberation. Nearly all participants (93 percent) agreed that all participants’ positions were considered with equal respect during deliberations. Most (64 percent) agreed they would “trust a process like this to inform funding decisions.” About three-quarters agreed with the statements, “The way in which the group reached its decision was equally fair to each member of the group,” and “I gained understanding of the arguments that opposed my own.” About one-quarter said there was too little time to discuss. When asked “How much input do people like you have in setting research priorities?”, 20 percent of participants said “a great deal,” 64 percent said “some,” and 16 percent said “none at all.” When asked “How much input should people like you have in setting research priorities?”, 44 percent of participants said “a great deal,” 53 percent said “some,” and three percent said “none at all.”
Limitations
Participants were not selected randomly, and this was a modest sized study limited to a few regions in two states, so priorities and experiences may not be generalizable beyond the study sample.
Conclusions
In informed deliberations, members of underserved communities prioritized research on quality of life, patient–doctor relations, special needs, access, and comparative effectiveness. Deliberations about priorities were judged as fair by participants. Most would support and trust this method for informing funding decisions. Deliberative methods could help research institutions, funders, community groups, and advocacy organizations engage patients and stakeholders in research priority-setting.