Patients play a powerful role in medical research. Individuals’ lived experiences are key for advancing understanding of disease and shaping treatment protocols.
However, patient partners are not always given due credit for their contributions. Note the term patient partner refers to a patient (or caregiver or person with lived experience), who is a collaborator on a research team (not patients who participant in a research study).
Now a new paper aims to encourage researchers to empower all team participants—most notably patients—with practical advice on navigating the collaborative relationship and the essential contributions of patient partners.
“Guidance on authorship with and acknowledgement of patient partners in patient-oriented research” is co-written by a group of researchers and, aptly, patient partners of the Chronic Pain Network.
The authors raise an important question: How do research teams fairly and appropriately acknowledge the essential role and contributions of patient partners when it comes to publishing?
The new guidance, intended for both researchers and patient partner audiences, is “meant to facilitate conversations between researchers and patient partners about authorship and/or acknowledgement regarding research projects on which they collaborate. While the overall principles of academic authorship and acknowledgement remain unchanged, nuances for interpreting these principles through the lens of patient engagement or patient-oriented research is provided.”
The work includes an “overview of the scientific publishing process, explanation of some common terms, and sets of considerations are provided for both patient partners and researchers in determining the range of team member contribution from acknowledgement to authorship.”
While existing recommendations for academic authorship and acknowledgement still apply (and are in many ways as relevant for patient partners as other researchers), added considerations are involved with patient-oriented research.
“Conversations about authorship can be difficult, even for established research teams,” according to the authors. “This guidance, and the resources discussed within it, are provided with the intention of making these conversations easier and more thoughtful.”
Recognizing patients as true partners in the research is an important step in the process of generating valuable insights and knowledge to improve healthcare systems and practices. It’s a vital step to more clearly define and recognize the role of patients, who, though lived experiences, are helping shape the future of patient care and research.