title: Emerging Guidelines for Patient Engagement in Research.
abstract: 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.
authors.affiliation: University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK.
authors.forename: John R
authors.initials: JR
authors.lastname: Kirwan
authors.affiliation: Department of Medical Humanities, VU University, Amsterdam, The Netherlands.
authors.forename: Maarten
authors.initials: M
authors.lastname: de Wit
authors.affiliation: Patient-Centered Outcomes Research Institute, Washington DC USA.
authors.forename: Lori
authors.initials: L
authors.lastname: Frank
authors.affiliation: Royal College of Nursing Research Institute, Warwick Medical School, Warwick University, Coventry, UK.
authors.forename: Kirstie L
authors.initials: KL
authors.lastname: Haywood
authors.affiliation: School of Life and Medical Sciences, University of Hertfordshire, Hatfield, UK.
authors.forename: Sam
authors.initials: S
authors.lastname: Salek
authors.affiliation: Warwick Medical School, Warwick University, Coventry, UK.
authors.forename: Samantha
authors.initials: S
authors.lastname: Brace-McDonnell
authors.affiliation: Ingersoll, ON Canada.
authors.forename: Anne
authors.initials: A
authors.lastname: Lyddiatt
authors.affiliation: Department of Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, Canada.
authors.forename: Skye P
authors.initials: SP
authors.lastname: Barbic
authors.affiliation: IMIM-Institut Hospital del Mar d'Investicacions Médiques, CIBER en Epdiemiología y Salud Pública (CIBERESP). Barcelona, Spain.
authors.forename: Jordi
authors.initials: J
authors.lastname: Alonso
authors.affiliation: Faculté de Médecine, Université de Lorraine, Vandoeuvre-les-Nancy, France.
authors.forename: Francis
authors.initials: F
authors.lastname: Guillemin
authors.affiliation: Divisions of Clinical Epidemiology, Rheumatology and Respirology. McGill University, Montreal, QC. Electronic address: Susan.bartlett@mcgill.ca.
authors.forename: Susan J
authors.initials: SJ
authors.lastname: Bartlett
mesh_terms: D001290:Attitude; D017408:Guidelines as Topic; D006801:Humans; D009939:Organizations, Nonprofit; D063868:Patient Outcome Assessment; D010358:Patient Participation; D012106:Research; D035844:Researcher-Subject Relations; D011795:Surveys and Questionnaires
keywords: patient engagement; patient participation; patient-centered outcomes research; patient-reported outcomes