There is increasing recognition that patients should have a substantive voice in shaping the research agenda alongside investigators, funders, and sponsors. The Skin Investigation Network of Canada (SkIN Canada) conducted a national, multi-phase priority setting initiative from November 2020 to February 2022 to identify patient-relevant knowledge gaps and prioritize research questions for skin conditions.
As part of this national initiative, all stakeholders including patients, caregivers, clinicians, and researchers were invited to provide input at various stages. A survey of completed by 114 skin researchers and clinicians identified nine skin conditions that require additional research focus: atopic dermatitis, psoriasis, hidradenitis suppurativa, squamous cell carcinoma, basal cell carcinoma, Merkel cell carcinoma, chronic wounds, scars, and burns. Subsequently, 425 patients, clinicians, and researchers participated in a systematic series of surveys and workshops (figure 1) to produce the Top Ten research priorities and knowledge gaps for each of the nine skin conditions.
This landmark Skin Canada initiative identified areas of overlap and distinction between the priorities of patients and clinicians, amalgamating both perspectives into the final Top Ten lists of priorities. Partnership with patient organizations was critical to engaging individuals with lived experience with skin disease. The rigorously-developed Top Ten lists will guide funders, research organizations, and policymakers to meet the urgent needs of Canadians living with skin conditions.
