What exactly is patient-oriented research?
Isn’t all health research patient-oriented, since they are about patients, for patients?
Not quite.
Who do you picture as “health researchers”?
You might envision people adorning white coats or business professional attire, looming over lab samples, seated at a hospital bedside, positioned in front of densely packed posters, or seated with their heads together in conference. Their murmurs release currents of field-specific jargon provided by training that earned them credentials and that spot in this imaginary scenario. Who are they? Academics, clinicians, and scientists, of course.
Could any of those researchers be patients?
Patients and partners are being recruited more as research partners in study and intervention design. For example, patient partners can offer insight into data collection methods and manuscript writing that would be more appropriate, understandable, equitable, and conscientious for other patients participating in the study. There are numerous ways patients can be engaged in health research (Domecq et al. 2014). For example, patients can also help their research teams ensure they obtain informed consent from participants by designing comprehensible consent forms that also consider patient priorities and concerns about participating in research. Patient-oriented research is crucial to medical literature because it prioritizes the unique kind of expertise patients possess about their own lived experiences, which can offer certain nuances to decision-making for research that clinicians and scientists may not be able to provide.
The United Kingdom is spearheading policy support for patient-oriented research by pushing for researchers to provide evidence of patient engagement when they seek approval from ethics committees for clinical trials (Rishi, 2024). The need to mandate patient engagement in clinical trials amongst other types of health research is compelling because patient partners can help recruit and retain a larger and more diverse participant pool that provides more robust evidence for the efficacy of a drug (Rishi, 2024). Patients can also help foresee potential problems and minimize diversions in research plans for more efficient treatment development. Advocacy for patient-oriented research has also led to changes in manuscript structure. Some papers have a dedicated “Patient and Public Involvement” or PPI section that recognizes community members, patients, or other stakeholders who shaped how the research project was executed (Jones et al., 2021).
However, there are still glaring issues about patient engagement as an emerging health research priority. Despite the essential role patients play in shaping research, co-author recognition of patient partners is rather scarce (Ellis et al., 2021 and Sarna-Wojcicki et al., 2017) and terminology used to describe patient engagement in papers is sometimes vague. Many researchers are commenting on these patterns in the literature and pushing recommendations to standardize and ensure giving due credit to patient partner contributions (Pawliuk et al., 2023; Easley et al., 2023; Fox et al., 2023; Etchegary et al., 2023; Chudyk et al., 2024) . There are also concerns about tokenistic motivations for engaging patients in research to benefit medication rollout and perceptions of the publication (Rishi, 2024).
But patient engagement, done properly, requires health research team members to be genuinely immersed in empathizing, maintaining humility, and being keen on nuance when consulting patients; which are central principles of narrative medicine. Whether you are involving yourself in research, aspire to be in research, or will interact with medical literature in future courses or employment, it is worth considering how you can bring in people with lived experiences onto your research team and/or considering the role, if any, of patients in the research you evaluate. And if you have any health-related experiences you are comfortable centering in your work, there are definitely spaces in research where your perspective is highly valued and impactful.
References:
Chudyk, A.M., Stoddard, R., Duhamel, T.A. et al. (2024) Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers. Health Res Policy Sys 22, 24. https://doi.org/10.1186/s12961-024-01106-w
Domecq, J. P., Prutsky, G., Elraiyah, T., Wang, Z., Nabhan, M., Shippee, N., Brito, J. P., Boehmer, K., Hasan, R., Firwana, B., Erwin, P., Eton, D., Sloan, J., Montori, V., Asi, N., Dabrh, A. M., & Murad, M. H. (2014). Patient engagement in research: a systematic review. BMC health services research, 14, 89. https://doi.org/10.1186/1472-6963-14-89
Easley, J., Wassersug, R., Matthias, S., Tompson, M., Schneider, N. D., O'Brien, M. A., Vick, B., & Fitch, M. (2023). Patient Engagement in Health Research: Perspectives from Patient Participants. Current oncology (Toronto, Ont.), 30(3), 2770–2780. https://doi.org/10.3390/curroncol30030210
Ellis, U., Kitchin, V., & Vis-Dunbar, M. (2021). Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review. Journal of participatory medicine, 13(2), e27141. https://doi.org/10.2196/27141
Etchegary, H., Linklater, S., Duquette, D. et al. (2023) “I think there has to be a mutual respect for there to be value”: Evaluating patient engagement in a national clinical trial on de-implementation of low value care. Res Involv Engagem 9, 70. https://doi.org/10.1186/s40900-023-00483-w
Fox, G., Lalu, M.M., Sabloff, T. et al. (2023). Recognizing patient partner contributions to health research: a systematic review of reported practices. Res Involv Engagem 9, 80. https://doi.org/10.1186/s40900-023-00488-5
Pawliuk, C. Hermansen, A. Barrans, C. Siden, H.(2024) Contributions and recognition of patient partners in pediatric health research: a rapid scoping review protocol. Open Science Framework. https://www.researchgate.net/publication/371446875_Contributions_and_recognition_of_patient_partners_in_pediatric_health_research_a_rapid_scoping_review_protocol
Rishi, A. (2024, September 23). The UK's push for evidence of patient engagement in ethics submissions for clinical trials. Couch. https://couch.health/the-uks-push-for-evidence-of-patient-engagement-in-ethics-submissions-for-clinical-trials/
Sarna‐Wojcicki, D., Perret, M., Eitzel, M. V., & Fortmann, L. (2017). Where are the missing coauthors? Authorship practices in participatory research. Rural Sociology, 82(4), 713-746. https://doi.org/10.1111/ruso.12156
By Christina Zeng (She/Her) | Blog Committee Member
