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Patient experience and challenges in group concept mapping for clinical research
Geoffrey D Mills1, Marianna LaNoue2,3, Alexzandra T Gentsch4
1Department of Family and Community Medicine, Thomas Jefferson University, 833 Chestnut Street, Suite 301, Philadelphia, PA, 19107, USA. geoffrey.mills@jefferson.edu.
Journal of Patient-Reported Outcomes
|August 17, 2019
Summary
Patients found value in group concept mapping (GCM) for diabetes research, despite some challenges with the sorting phase. Researchers should adapt methods to enhance the patient experience in GCM studies.
Area of Science:
- Patient-centered research methodologies
- Health outcomes research
- Qualitative research methods
Background:
- Group concept mapping (GCM) is a method for stakeholder idea generation and structuring.
- While used with patients for health topics, the patient experience in GCM is under-explored.
- This study investigates patient experiences participating in GCM.
Purpose of the Study:
- To explore patient experiences participating in group concept mapping (GCM).
- To assess patient-reported impact and ease of GCM steps.
- To identify areas for improving GCM in patient-engaged research.
Main Methods:
- Secondary analysis of a larger study involving 3 GCM iterations for diabetes care outcomes.
- Tracking participant assistance needs during GCM sorting and rating.
- Administering a 17-question telephone survey on patient experience and GCM process ease.
Main Results:
- Patients reported significant value, with 92% feeling they contributed importantly.
- 90% believed their efforts would help others with diabetes.
- Patients found brainstorming easier than sorting and rating statements, with assistance needed for software and sorting.
Conclusions:
- Patients perceive value in participating in GCM.
- The sorting phase of GCM presents a greater challenge for patients than brainstorming.
- Consideration of paper-based sorting and objective quality measures can improve patient experience and concept map quality in GCM.
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