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.

Project Information

Susan Goold, MD, MHSA
University of Michigan, Ann Arbor
$664,380
Public Deliberations about Patient Centered Outcomes Research Priorities

Key Dates

June 2012
December 2014
2012
2014

Study Registration Information

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State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022