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.
INTRODUCTIONHealth research teams increasingly include patients, caregivers, clinicians, and other stakeholders whose primary careers are not health research. This may occur because team leaders are convinced of the merits of such an approach, because funders or publishers require it, or both. 1-4 Such partnerships are intended to increase the relevance of research to those who might benefit from it and thus to reduce research waste. 5 This is an excellent and laudable aim; however, there is relatively little practical guidance available about how to effectively conduct such partnered research.Previous reviews and evaluations demonstrate four points about conducting partnered research. First, research teams with patients, caregivers, and other stakeholder team members tend to involve these stakeholders more at earlier stages in the project than at later stages. 6,7 Second, people coming into projects without a research background may require orientation in order to participate fully. 8 Third, benefits of partnership may be difficult to formally assess. 9 Fourth, time requirements are a frequent concern for everyone. 7,10 These reviews offer valuable evidence syntheses relevant to partnership, as do recommendations from long-standing traditions of methods
558JGIM such as community-based participatory research 11 and participatory action research. 12 However, as partnered research expands across research types and funding opportunities, more people are engaging in team structures that are new to them. Available frameworks suggest structures for partnerships, [13][14][15][16] and literature promotes broad principles such as addressing issues of power and equity [17][18][19...