One of PCORI’s goals is to improve the methods that researchers use for patient-centered outcomes research. PCORI funds methods projects like this one to better understand and advance the use of research methods that improve the strength and quality of comparative effectiveness research.
This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.
What is the research about?
Clinical practice guidelines are recommendations for doctors about when and how to treat or test for health problems. Guidelines draw on research that compares the benefits and harms of different tests or treatments.
Patients’ and caregivers’ views can help make sure guidelines address patients’ needs. But patients and caregivers aren’t usually involved in creating guidelines. Medical societies or other groups that develop guidelines may have a hard time finding enough people with rare diseases to participate. Also, some patients may find it hard to travel to in-person meetings with guidelines groups.
In this study, the research team is creating and testing a new online process for including patient and caregiver views in guideline development. To capture patient and caregiver feedback, the team is using a modified Delphi Method. Delphi Method projects gather multiple people’s opinions on a topic. Participants review each other’s opinions and revise their own several times to focus on what the group sees as most important. The team is using what they learn from this process to find best practices for engaging patients in guideline development online.
Who can this research help?
Study results may help guideline developers better capture patients’ insights in clinical practice guidelines.
What is the research team doing?
There are three parts to this study. In the first part, the research team is adapting an online system called ExpertLens to engage patients and caregivers in guideline development. ExpertLens helps patients and caregivers identify, rate, review, and revise their opinions on aspects of patient care.
In the second part, the research team is testing ExpertLens. The team is using registries to recruit 95 adults with a rare condition called Duchenne muscular dystrophy and their caregivers. Participants take part in one of two modified Delphi panels to review care guidelines on this health problem. With this method, participants first review recommendations for clinical care that doctors regard as necessary for Duchenne muscular dystrophy. The participants rate the recommendations from patients’ point of view. Participants then get to see how others rated the same information. They discuss group responses on online discussion boards. Finally, participants rate the information again with others’ opinions in mind. The team is surveying and interviewing participants to see if ExpertLens and this method of rating guidelines capture their views.
In the third part, the research team is finding what works best for engaging patients and their caregivers in guideline development. To do so, the team is seeking input from its project advisory board and reviewing research on this topic.
Patients with Duchenne muscular dystrophy, their caregivers, and clinicians are helping to plan the study, collect data, and interpret study findings.
Research methods at a glance
|Goal||To develop a process for incorporating patient and caregiver views into guideline development|
|Approach||Modifying the Delphi Method to solicit feedback from patients and their caregivers in developing guidelines using an online platform; testing this method with patients with Duchenne muscular dystrophy and their caregivers; defining best practices for engaging patients in guideline development using an online modified Delphi approach|
- Brian Denger
- Parent Project Muscular Dystrophy
Other Stakeholder Partners
- No information provided by awardee