Prioritizing Psoriasis Research Questions: A James Lind Alliance Priority Setting Partnership

1. Developing a protocol to identify and prioritise research questions for psoriasis: A James Lind Alliance Priority Setting Partnership R Majeed-Ariss, M McPhee, C Bundy, CEM Griffiths, H Young On behalf of the Psoriasis PSP Steering Group University of Manchester doi: 10.1111/bjd.15992

2. Lead researcher : Dr Helen Young

3. Introduction What’s already known? • Psoriasis is a common immune-mediated inflammatory skin disease affecting over two million people in the UK • Psoriasis has an economic cost to the National Health Service of £500 million per annum • Access to appropriate care can be poor for people with psoriasis who often also experience: • psychological distress • complex social needs • physiological symptoms • Many unanswered questions about psoriasis remain

4. Objectives • Work with patients, families, carers and healthcare professionals to identify psoriasis uncertainties • Agree by consensus a top ten list of psoriasis uncertainties • Influence future research by sharing the research questions considered most important by stakeholders to funders

5. The Psoriasis Priority Setting Partnership (PSP) will follow James Lind Alliance’s well defined 5 stage methodology • Develop partnerships: key stakeholder organisations agree to support PSP • Build a steering group: equal number of patients and health professionals from UK • Identify & collate uncertainties: Survey gathers questions from patients, carers and health professionals • Interim priority setting: Survey questions collated as ‘True uncertainties’ or ‘Unrecognised knowns’ • Final priority setting: Stakeholders attend workshop, debate and ultimately decide on the ‘Top 10’ uncertainties

6. Survey 1 Asking for questions regarding psoriasis uncertainties from patients, families, carers and health professionals Figure 1. Flowchart of psoriasis Priority Setting Partnership process ‘True uncertainties’ full list published on James Lind Alliance website Uncertainties collated All responses are sorted to identify ‘true uncertainties’ and ‘unrecognized knowns’ ‘Unrecognized knowns’ shared with relevant organizations for further dissemination Survey 2 Participants in survey 2 to rank questions considered in order of importance Priority setting workshop Where top 10 uncertainties taking research priority will be agreed by patients, carers and health professionals Top-10 uncertainties Information will be published so that future research focuses on the most important questions

7. Your Psoriasis PSP needs you Please help us and complete a survey, it only takes a few minutes https://www.psoriasis-association.org.uk/research/psp #PsoriasisTop10

8. Results • By following the protocol outlined in the paper a prioritised list of uncertainties will be identified • The ‘Top 10’ will inform the psoriasis research agenda

9. Summary This project will utilise and direct scarce resources by: • Informing policymakers & research funding bodies of what really matters to patients and clinicians • Facilitating targeted research that addresses priorities agreed by stakeholders

10. ConclusionWhat does this study add? • Academic researchers and commercial interests have traditionally held pivotal roles in setting research agendas • with patients views given less emphasis • This study will, for the first time, work with patients, carers & healthcare professionals to identify psoriasis uncertainties • A ‘top ten’ list of uncertainties disseminated to researchers and funders will promote studies focusing on questions key stakeholders have agreed as the most important

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