Emerging Guidelines for Patient Engagement in Research

• Published in: Value in health Vol. 20; no. 3; pp. 481 - 486
• Main Authors: Kirwan, John R., de Wit, Maarten, Frank, Lori, Haywood, Kirstie L., Salek, Sam, Brace-McDonnell, Samantha, Lyddiatt, Anne, Barbic, Skye P., Alonso, Jordi, Guillemin, Francis, Bartlett, Susan J.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.03.2017; Elsevier Science Ltd; Elsevier [1988-....]
• Subjects: Acknowledgment; Attitude; Clinical outcomes; Concept formation; Guidelines as Topic; Human subjects; Humans; Internal Medicine; Life Sciences; Medical research; Organizations, Nonprofit; Patient communication; patient engagement; Patient Outcome Assessment; Patient Participation; Patient-centered care; patient-centered outcomes research; patient-reported outcomes; Reciprocity; Research partnerships; Researcher-Subject Relations; Santé publique et épidémiologie; Surveys and Questionnaires; Teams; Training needs; patient-reported outcomes; patient-centered outcomes research; patient engagement; patient participation
• ISSN: 1098-3015; 1524-4733; 1524-4733
• DOI: 10.1016/j.jval.2016.10.003

There is growing recognition that involving patients in the development of new patient-reported outcome measures helps ensure that the outcomes that matter most to people living with health conditions are captured. Here, we describe and discuss different experiences of integrating patients as full patient research partners (PRPs) in outcomes research from multiple perspectives (e.g., researcher, patient, and funder), drawing from three real-world examples. These diverse experiences highlight the strengths, challenges, and impact of partnering with patients to conceptualize, design, and conduct research and disseminate findings. On the basis of our experiences, we suggest basic guidelines for outcomes researchers on establishing research partnerships with patients, including: 1) establishing supportive organizational/institutional policies; 2) cultivating supportive attitudes of researchers and PRPs with recognition that partnerships evolve over time, are grounded in strong communication, and have shared goals; 3) adhering to principles of respect, trust, reciprocity, and co-learning; 4) addressing training needs of all team members to ensure communications and that PRPs are conversant in and familiar with the language and process of research; 5) identifying the resources and advanced planning required for successful patient engagement; and 6) recognizing the value of partnerships across all stages of research. The three experiences presented explore different approaches to partnering; demonstrate how this can fundamentally change the way research work is conceptualized, conducted, and disseminated; and can serve as exemplars for other forms of patient-centered outcomes research. Further work is needed to identify the skills, qualities, and approaches that best support effective patient-researcher partnerships.