PATIENT ENGAGEMENT IN PARTICIPATORY RESEARCH
PROMISING PRACTICES
As a leading patient advocacy organization representing people with smell or taste dysfunction, the Smell and Taste Association of North America (STANA) has access to a broad community of patients who entrust STANA’s leadership with the breadth of their lived experience. Engaging with STANA or members of the patient community that STANA represents can enhance and innovate research, policy, healthcare practice, and other critical workstreams. Therefore, in working with clinicians, researchers and others involved in research, STANA seeks to bring patients to the research table, not as mere study participants or subjects but as integral members of research teams.
STANA is committed to upholding the best and promising practices of patient engagement and invites partners, collaborators, researchers, clinicians, patient groups, patients, and other interested parties to do the same.
STANA has prepared guidance for promising engagement practices across an array of settings and activities focused on the senses of taste and smell. Engaging in research that is more patient-centered by focusing on outcomes that matter to patients will deliver better results for all stakeholders.
In 2023, STANA was approved for a funding award through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). These Promising Practices were prepared as part of STANA's Smell and Taste Disorders: Building STANA's Capacity for Patient Engagement in PCOR/CER (STEP) project to build capacity for patient engagement in patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) for taste and smell disorders.
Read the Complete Guidance
The Promising Practices are summarized above as 9 guidelines, please contact STANA for a full copy of the Promising Practices for Patient Engagement in Participatory Research.
The “patient engagement” STANA advocating is the concept of patients leading or partnering in efforts to shape research and other activities, not the more traditional notion of patients engaged as partners in their own care or as “subjects” in research.