Saturday, 13 January 2018
Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders.
J Gen Intern Med. 2018 Jan 4. doi: 10.1007/s11606-017-4269-6. [Epub ahead of print] Witteman HO1,2,3,4, Chipenda Dansokho S5, Colquhoun H6, Fagerlin A7, Giguere AMC8,5,9, Glouberman S10, Haslett L11, Hoffman A12, Ivers NM13,14, Légaré F8,15,16, Légaré J17, Levin CA18, Lopez K19, Montori VM20, Renaud JS8,5, Sparling K21, Stacey D22,23, Volk RJ24. Author information 1 Department of Family and Emergency Medicine, Laval University, Quebec City, QC, Canada. firstname.lastname@example.org. 2 Office of Education and Continuing Development, Faculty of Medicine, Laval University, Quebec City, QC, Canada. email@example.com. 3 Laval University Research Institute for Primary Care and Health Services (CERSSPL-UL), Quebec City, QC, Canada. firstname.lastname@example.org. 4 Research Centre of the CHU de Québec, Quebec City, QC, Canada. email@example.com. 5 Office of Education and Continuing Development, Faculty of Medicine, Laval University, Quebec City, QC, Canada. 6 Occupational Science and Occupational Therapy, Toronto, ON, Canada. 7 Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA. 8 Department of Family and Emergency Medicine, Laval University, Quebec City, QC, Canada. 9 Quebec Centre for Excellence in Aging, St-Sacrement Hospital, Quebec City, QC, Canada. 10 Patients Canada, Toronto, ON, Canada. 11 East End Community Health Centre, Toronto, ON, Canada. 12 Department of Community and Family Medicine, Geisel School of Medicine at Dartmouth, The Dartmouth Institute for Health Policy and Clinical Practice, Lebanon, NH, USA. 13 Family Practice Health Centre and Institute for Health Systems Solutions and Virtual Care, Women's College Hospital, Toronto, ON, Canada. 14 Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada. 15 Laval University Research Institute for Primary Care and Health Services (CERSSPL-UL), Quebec City, QC, Canada. 16 Research Centre of the CHU de Québec, Quebec City, QC, Canada. 17 Arthritis Alliance of Canada, Québec, Canada. 18 Informed Medical Decisions Foundation, Healthwise, Inc., Boston, MA, USA. 19 , Anchorage, AK, USA. 20 Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, MN, USA. 21 Six Until Me, East Greenwich, RI, USA. 22 School of Nursing, University of Ottawa, Ottawa, ON, Canada. 23 Ottawa Hospital Research Institute, Ottawa, ON, Canada. 24 Department of Health Services Research, The University of Texas MD Anderson Cancer Center, Houston, TX, USA. Abstract Research increasingly means that patients, caregivers, health professionals, other stakeholders, and academic investigators work in partnership. This requires effective collaboration rooted in mutual respect, involvement of all participants, and good communication. Having conducted such partnered research over multiple projects, and having recently completed a project together funded by the Patient-Centered Outcomes Research Institute, we collaboratively developed a list of 12 lessons we have learned about how to ensure effective research partnerships. To foster a culture of mutual respect, hold early in-person meetings, with introductions focused on motivation, offer appropriate orientation for everyone, and maintain awareness of individual and project goals. To actively involve all team members, it is important to ensure sufficient funding for everyone's participation, to ask for and recognize diverse contributions, and to seek the input of quiet members. To facilitate good communication, teams should carefully consider labels, avoid jargon and acronyms, judiciously use homogeneous and heterogeneous subgroups, and keep progress visible. In offering pragmatic, actionable lessons we have learned through our separate and shared experiences, we hope to help foster more patient-centered research via productive and enjoyable research collaborations. KEYWORDS: patient engagement; patient-centered outcomes research; stakeholder engagement PMID: 29327211 DOI: 10.1007/s11606-017-4269-6