Comparing Two Ways to Identify What's Important to Patients in Research

PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE RESEARCH SUMMARY March 2020 PROJECT INFORMATION Comparing Two Ways to Identify What’s Important to Patients in Research Organization Principal investigator Kristin L. Rising, MD, MSHP What was the project about? Research that focuses on what’s most important to patients can inform health decisions. Researchers use different methods to identify what’s most important to patients. In this study, the research team compared two methods for identifying what’s most important to patients: one-on-one interviews and group concept mapping, or GCM. GCM is a three-round process that helps researchers get input from a group. In the first round, people brainstorm topics that are important to them. Next, people sort the topics into clusters based on similar ideas. Finally, researchers create a map to display and discuss the topics. Researchers can use the complete GCM process or the brainstorming round only. The research team looked at one-on-one interviews versus GCM and compared the number of topics patients named and the amount of time and money required. What did the research team do? The research team did one-on-one interviews with 89 patients and three complete GCM processes with a total of 52 patients. All patients had type 1 or type 2 diabetes. The team asked patients what was most important to them when making decisions about managing diabetes. The team compared the number of topics mentioned in GCM versus in interviews. To look at the amount of time and money each method required, the team kept an activity log for each method. The log recorded costs and time required of patients and research staff for each task. WWW.PCORI.ORG/RISING304 Thomas Jefferson University Of the patients, 72 percent were black, 20 percent were white, and 6 percent were another race. In addition, 8 percent were Hispanic. All sought care from one health system in Philadelphia. Patients, patient advocates, and healthcare professionals gave input throughout the study. What were the results? Patients named 38 topics in GCM compared with 26 topics in interviews. They named 41 unique topics overall. Be healthy was the most common topic. Across 41 unique topics, the research team identified seven themes: • Improve daily self-care. • Improve long-term health. • Learn about diabetes. • Measure and achieve goals. • Manage medicines. • Manage diet. • Best use medical or professional services. Both GCM brainstorming alone and the complete GCM process required fewer research team hours (78 hours for GCM brainstorming, 104 hours for complete GCM) than interviews (295 hours in total). But GCM required more hours per patient (three hours for GCM brainstorming, eight hours for complete GCM) than [email protected] | WWW.PCORI.ORG | @PCORI interviews (one hour per interview). GCM brainstorming cost less and complete GCM cost more than interviews ($3,130 for interviews, $1,200 for GCM brainstorming, $5,000 for complete GCM). What were the limits of the project? All patients in the study had diabetes and received care at the same health system. Future research could WWW.PCORI.ORG/RISING304 include people with other health needs or people who receive care at other health systems. How can people use the results? Researchers can use the results when selecting methods to identify what’s most important to patients. To learn more about this project, visit www.pcori.org/Rising304. [email protected] | WWW.PCORI.ORG | @PCORI © 2020 Patient-Centered Outcomes Research Institute. All Rights Reserved. This publication is downloadable from PCORI’s website and may be used in accordance with PCORI’s Terms of Use (www.pcori.org/about-us/terms-use).