Some communities prefer person-first language-for example, “people with diabetes” rather than “diabetics” or “diabetic patients.” However, other communities may prefer to embrace descriptors as part of their identity-for example, “autistic people.” These preferences may vary across and even within communities. It is critical to become aware of acceptable and unacceptable language. Think carefully about labels, as they convey implicit values. These lessons are intended for all people working in such projects, including patients, caregivers, clinicians, researchers, policymakers, and others. In this article, we draw from our collective years of experience as patients, caregivers, clinicians, other stakeholders and academic researchers in partnered projects to offer 12 practical lessons we have learned about how to better conduct partnered research. 20 – 22, 24 – 31 However, it can be difficult for teams, particularly those new to this type of work, to operationalize abstract structures and principles in the specific context of their research project. Available frameworks suggest structures for partnerships, 13 – 16 and literature promotes broad principles such as addressing issues of power and equity 17 – 25 and developing relationships of trust. 12 However, as partnered research expands across research types and funding opportunities, more people are engaging in team structures that are new to them. 7, 10 These reviews offer valuable evidence syntheses relevant to partnership, as do recommendations from long-standing traditions of methods such as community-based participatory research 11 and participatory action research. 9 Fourth, time requirements are a frequent concern for everyone. 8 Third, benefits of partnership may be difficult to formally assess. 6, 7 Second, people coming into projects without a research background may require orientation in order to participate fully. 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. Previous reviews and evaluations demonstrate four points about conducting partnered research. 5 This is an excellent and laudable aim however, there is relatively little practical guidance available about how to effectively conduct such partnered research. 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. This may occur because team leaders are convinced of the merits of such an approach, because funders or publishers require it, or both. Health research teams increasingly include patients, caregivers, clinicians, and other stakeholders whose primary careers are not health research. 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. To facilitate good communication, teams should carefully consider labels, avoid jargon and acronyms, judiciously use homogeneous and heterogeneous subgroups, and keep progress visible. 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 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. 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. This requires effective collaboration rooted in mutual respect, involvement of all participants, and good communication. Research increasingly means that patients, caregivers, health professionals, other stakeholders, and academic investigators work in partnership.
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