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

Clinical practice guidelines are recommendations for doctors about when and how to test for or treat various conditions. These guidelines are based on research that compares the benefits and harms of different tests or treatments. Sometimes the research evidence conflicts or is complicated, so people might disagree about what a guideline should recommend.

Usually, medical experts write guidelines with little input from patients or other interested parties. According to the National Academy of Medicine, patients, doctors, public health officials, and other interested individuals need to play bigger roles in developing clinical guidelines. However, there is not much research on how these groups can help create guidelines.

Project Purpose

This study tested a way for patients, doctors, public health officials, and other interested individuals to develop guidelines for cancer screening.

Methods

The researchers created two groups to develop guidelines. One group focused on prostate cancer screening, and the other group focused on lung cancer screening. Each group had 21 people and included patients, primary care doctors, specialty doctors, public health officials, health system administrators, and representatives of health insurance companies.

Each group followed the same process to develop the guidelines. A team of doctors, medical researchers, and scientists presented research summaries to the group. Each group met in person four times. Each meeting was three hours long and led by a professional moderator. Smaller groups met in web conferences to talk about different parts of the guidelines. The groups used email to make final decisions about the guidelines.

At the beginning and end of the project, the researchers asked participants how they felt about their group’s work, their understanding of cancer screening, and their understanding of the evidence. Researchers also listened to the meetings and took notes about how the members of each group talked to one another.

Findings

Patients, doctors, public health officials, and other interested groups worked together to develop clinical practice guidelines for lung and prostate cancer screening. Study participants were able to make recommendations even when there was not much evidence, when some research contradicted other research, or when it was necessary to balance the benefits and harms of a test.

 Patients participated more in the groups when moderators built relationships among group members at the start of discussions and encouraged patients to share their ideas and values.

Limitations

The study only looked at guidelines for prostate and lung cancer screening. The group method may not work for other health problems or when a treatment decision is complicated.

Conclusions

Researchers found that patients, doctors, public health officials, and other interested groups can work together to create clinical guidelines, even if they do not know the topic well.

Sharing the Results

The Massachusetts Department of Public Health used the prostate cancer guideline to develop a decision aid to help doctors and patients talk about prostate cancer screening and to share information about prostate screening with the public. The researchers have presented their work at a national conference.

More to Explore...

Dissemination Activities

Through limited competition, PCORI awarded 25 of the 50 Pilot Projects up to $50,000 to support dissemination and implementation of their activities and findings through the PCORI Pilot Project Learning Network (PPPLN) funding. The deliverables listed below are a result of convenings and conferences supported by this funding, whose efforts align with the PCORI strategic goal of disseminating information and encouraging adoption of PCORI-funded research results.

Period: September 2015 to December 2015
Budget: $49,987

Held a Massachusetts Statewide Lung Cancer Screening Conference in November 2015.

Period: September 2015 to December 2015
Budget: $49,998

Held a multistakeholder panel meeting on Implementing Decision Aids at Umass in December 2015 and facilitated a meeting between Mass General Hospital and Dana Farber to discuss breast cancer cecision aids.

Journal Citations

Related Journal Citations

Project Information

Roger S. Luckmann, MD, MPH
University of Massachusetts Medical School
$693,087
Direct Engagement of Stakeholders in Translating CER into Clinical Guidelines

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