Top Ten Research Priorities for Psoriasis, Atopic Dermatitis and Hidradenitis Suppurativa: The SkIN Canada Priority Setting Initiative

Substantial progress in skin research over recent decades has led to a better understanding of the pathogenesis, epidemiology, diagnosis, and management of a broad range of skin conditions. As knowledge and societal needs evolve, it is critical to develop up-to-date research priorities that are relevant to patient care. While historically the research agenda has been largely driven by academia, funders, and industry, there is increasing recognition that the perspectives of patients and health care providers must be incorporated in the development of research priorities.^1-3

In response to the need for a better understanding of the key knowledge gaps relevant to patients living with skin disease and the health care providers managing them, the Skin Investigation Network of Canada (SkIN Canada) conducted a national priority setting initiative (PSI) to determine the most important skin diseases and research questions that ought to be prioritized to improve patient care. SkIN Canada is a national skin research network of researchers, patients, health care providers, and other stakeholders. It was created in 2020 to enhance and expand the skin research landscape in Canada by promoting interdisciplinary, multicentre collaboration. In this paper we present the overall PSI methods and the Top Ten lists of research priorities identified for inflammatory skin conditions psoriasis, atopic dermatitis, and hidradenitis suppurativa.

We conducted the study using the James Lind Alliance’s Guiding Principles of Priority Setting Exercises.¹ These include transparency; inclusion of balanced patient, caregiver and health care provider perspectives; exclusion of non-health care provider researchers from voting processes; and excluding stakeholders with significant competing interests (e.g., pharmaceutical companies). We used a seven step process to identify stakeholders, select priority skin conditions, identify knowledge gaps and, finally, rank knowledge gaps to create a list of priority research questions.^1,4

This project was approved by the Women’s College Hospital Research Ethics Board. Surveys were conducted in both English and French using REDCap and SOGOSurvey software.

We identified five health care provider and nine patient stakeholder organizations (Step 1; Supplemental Table 1), all of whom agreed to disseminate the surveys to their constituent groups. Overall, 538 individuals participated in at least one survey or workshop: 333 patients/caregivers, 164 health care providers, 24 non-clinician researchers, and 17 clinician-researchers.

Ninety-one health care providers, 16 non-clinician researchers, and seven clinician-researchers participated in Survey 1 to select the priority skin conditions (Supplemental Table 2). Atopic dermatitis, psoriasis, and hidradenitis suppurativa were selected as the top three inflammatory skin conditions. Chronic wounds, scars, and burns were selected as priority conditions in the category of wound healing, skin fibrosis and regeneration. Squamous cell carcinoma, basal cell carcinoma, and Merkel cell carcinoma were selected as priority skin cancers (Figure 1). Complete results of the ranking process for Survey 1 are presented in Supplemental Table 3.

Potential research questions were identified by our literature review (Step 3; Supplemental Tables 4-6) for atopic dermatitis (N = 35 research questions), psoriasis (N = 41), and hidradenitis suppurativa (N = 29) (Figure 1). These lists were combined with a total of 414 suggested research questions from 98 respondents in Survey 2 (Step 4) for atopic dermatitis, 404 questions from 123 respondents for psoriasis, and 166 questions from 42 respondents for hidradenitis suppurativa (Figure 1). Those research questions were ranked in Survey 3 by 35 patients/caregivers and 25 health care providers for atopic dermatitis, 71 patients/caregivers and 22 health care providers (Step 6) for psoriasis, and 12 patients/caregivers and 24 health care providers for hidradenitis suppurativa. The top ranked research questions from patients and health care providers were combined to create a shortlist of 18 research priorities for each of the three inflammatory skin conditions (Figure 1) (Supplemental Table 7).

As the final step, the Top Ten lists of research priorities were generated from the stakeholder workshops for atopic dermatitis (Table 1), psoriasis (Table 2), and hidradenitis suppurativa (Table 3) (Figure 1). PSI results for the top three skin cancers, chronic wounds, scars, and burns will be published separately.

With input from patients, caregivers, health care providers, and researchers, we identified SkIN Canada priority conditions under each of inflammatory, neoplastic and wound healing categories. We completed a national priority setting initiative to identify ranked lists of important patient-relevant knowledge gaps for atopic dermatitis, psoriasis, and hidradenitis suppurativa, the conditions that were identified as priorities among inflammatory skin conditions. The Top Ten research gaps for those inflammatory conditions ranged from better understanding the basic pathogenic mechanisms of disease to comorbidities and optimal management strategies.

We used the well-recognized and systematic James Lind Alliance methods to elicit and iterate on input from patients, caregivers and health care providers in addition to researchers. These methods ensure that the research questions selected are important to end-users who will ultimately put the evidence generated into practice. These priorities will now be adopted as the initial priorities of SkIN Canada, guiding its scope of activities and support. They can also be used by researchers, funding agencies, sponsors, and policymakers in Canada and internationally, helping them focus on questions that are important to patients, caregivers, and health care providers. Nevertheless, PSIs are not meant to be exhaustive or exclusive—research on other skin conditions and other research questions is still important and should be encouraged.

Questions related to molecular mechanisms of disease were prominent for the three inflammatory skin conditions, indicating a prominent role for basic and translational researchers. For psoriasis and hidradenitis suppurativa, many questions also focused on treatment strategies. Reflecting a more mature therapeutic field, questions for psoriasis focused on long term safety and optimizing strategies for existing treatments. For hidradenitis suppurativa, current treatment options and the evidence supporting them are more limited, so questions focused on developing new treatments and comparative effectiveness. For atopic dermatitis, questions were more focused on understanding the heterogeneity of different phenotypes and its waxing and waning longitudinal course.

In addition to the direct outputs of the PSI (Top Ten lists of research priorities), this project was an important step in the broader development of SkIN Canada. Part of the research network’s mission is to engage the community of skin disease patients, caregivers, health care providers and researchers to create an interdisciplinary collaboration empowered to conduct impactful research. Engaging with stakeholders, including patient and professional organizations, was crucial to the PSI process and has helped to build relationships and capacity for further engagement as the network progresses.