Courtney Armstrong1, Sean Grant2, Kathi Kinnett3, Brian Denger4, Ann Martin5, Ian Coulter6, Marika Booth7, Dmitry Khodyakov8. 1. Policy Analyst, RAND Health Care, RAND Corporation, San Francisco, CA, USA. 2. Assistant Professor, Department of Social & Behavioral Sciences, Indiana University Richard M. Fairbanks School of Public Health, Indianapolis, IN, USA; Adjunct Behavioral/Social Scientist, RAND Health Care, RAND Corporation, Santa Monica, CA, USA. 3. Senior Vice President, Clinical Care, Parent Project Muscular Dystrophy, Hackensack, NJ, USA. 4. Collaborative Programs Administrator, Parent Project Muscular Dystrophy, Hackensack, NJ, USA. 5. Director, The Duchenne Registry, Parent Project Muscular Dystrophy, Hackensack, NJ, USA. 6. Policy Researcher, Adjunct, RAND Health Care, RAND Corporation, Santa Monica, CA, USA. 7. Statistical Analyst, RAND Health Care, RAND Corporation, Santa Monica, CA, USA. 8. Senior Behavioral/Social Scientist, RAND Health Care, RAND Corporation, Santa Monica, CA, USA.
Abstract
BACKGROUND: Patient engagement in clinical practice guideline (CPG) development has increased significantly in recent years. However, only a few patients and caregivers join CPG development groups. OBJECTIVE: To describe participant experiences with a novel online, scalable approach for patient and caregiver engagement in CPG development. DESIGN: We developed and tested the RAND/PPMD Patient-Centeredness Method (RPM), a novel online modified-Delphi approach to patient engagement in CPG development that consists of an optional idea generation round and two rating rounds interspersed with an online discussion round. SETTING AND PARTICIPANTS: Using the online ExpertLens™ system, we ran 2 concurrent panels of patients and caregivers of individuals with Duchenne Muscular Dystrophy (DMD). MAIN OUTCOME MEASURES: We surveyed all 95 panel participants about their participation and satisfaction with the process. We also conducted telephone interviews with 25 participants. RESULTS: Participants expressed satisfaction with various ExpertLens™ features, noting that the system fostered lively interaction among them. Panelists also appreciated participating in an educational, interactive and convenient discussion forum that allowed them to share their opinions on the importance and acceptability of different recommendations. The RPM was viewed as empowering by patients and their caregivers who felt it would be useful for CPG developers. DISCUSSION AND CONCLUSION: The results of our study show the overall participant satisfaction with a novel, scalable, online approach to engaging patients and caregivers in CPG development, which allows them to share their perspectives and lived experiences using a rigorous, systematic and iterative way that is similar to how clinicians provide their input.
BACKGROUND: Patient engagement in clinical practice guideline (CPG) development has increased significantly in recent years. However, only a few patients and caregivers join CPG development groups. OBJECTIVE: To describe participant experiences with a novel online, scalable approach for patient and caregiver engagement in CPG development. DESIGN: We developed and tested the RAND/PPMD Patient-Centeredness Method (RPM), a novel online modified-Delphi approach to patient engagement in CPG development that consists of an optional idea generation round and two rating rounds interspersed with an online discussion round. SETTING AND PARTICIPANTS: Using the online ExpertLens™ system, we ran 2 concurrent panels of patients and caregivers of individuals with Duchenne Muscular Dystrophy (DMD). MAIN OUTCOME MEASURES: We surveyed all 95 panel participants about their participation and satisfaction with the process. We also conducted telephone interviews with 25 participants. RESULTS: Participants expressed satisfaction with various ExpertLens™ features, noting that the system fostered lively interaction among them. Panelists also appreciated participating in an educational, interactive and convenient discussion forum that allowed them to share their opinions on the importance and acceptability of different recommendations. The RPM was viewed as empowering by patients and their caregivers who felt it would be useful for CPG developers. DISCUSSION AND CONCLUSION: The results of our study show the overall participant satisfaction with a novel, scalable, online approach to engaging patients and caregivers in CPG development, which allows them to share their perspectives and lived experiences using a rigorous, systematic and iterative way that is similar to how clinicians provide their input.
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