Prioritizing the global research agenda in psoriasis: an International Psoriasis Council Delphi consensus exercise

Dear Editor, Major gaps persist regarding the full understanding of psoriasis – gaps that may be used to direct future research.1 Consequently, there is a need to build a consensus related to the key research needs in psoriasis, thereby allowing better allocation of resources. Acting on the need for collaborative and integrated approaches to psoriasis, the International Psoriasis Council (IPC; http://www.psoriasiscouncil.org), through its large network, sought to develop a robust research agenda that fulfils the needs of the broad scientific and clinical community. The Delphi methodology involves the anonymous reiterative voting on topics that do not have significant supporting scientific data. The process involves repeated voting after the individual questioning of a panel of experts, avoidance of direct confrontation among these experts, and interspersed controlled opinion and feedback.2 3 4 The feedback occurs between rounds of voting and, based upon that feedback, participants have the opportunity to change their previous voting selection. However, as the process is anonymous, the participant's response is not biased by the desire to be seen to agree with other voting panellists. Finally, the endeavour's definition of ‘consensus’ should be prespecified. In essence, to develop consensus on a given topic objectively, the Delphi method removes the biases of personality and eminence. The modified Delphi process implemented was based upon solicitation of the global IPC member database, which consists of 95 councillors as the expert panel. IPC councillors are selected based on their focused clinical care of patients with psoriasis, and their participation in clinical trials, basic research, publications and academic congresses dedicated to psoriasis. Initially, candidate research ideas in psoriasis were collected anonymously using free‐text entry into an online database (Fig. 1). Duplicate ideas were amalgamated. Sixty‐nine unique responses were then summarized into a list and circulated among the panel during the first two rounds of voting. Voting utilized a five‐point Likert scale where a score of 5 was deemed to be of highest importance. While all 95 councillors were invited to each voting round, the participation rate varied for each round, ranging from 46% to 75%. Nonresponders to one round were encouraged to participate in successive voting rounds, and lack of response was minimized via repeated e‐mail reminders over many weeks. Between the first and second rounds of voting the mean Likert score for each of the 69 topics was provided to the voters; however, no additional feedback was provided. Subsequently, after the second round of voting the top 25 topics were selected based on their average Likert score. In this group the mean Likert scores ranged from 3·3 to 4·2. Twenty councillors then volunteered to write summary briefs for these final topics. Voters were instructed to read each brief prior to participating in a final round of voting. A ‘challenge round’ was instituted in response to the final prioritized results to present an opportunity for councillors to question the appropriateness or redundancy of any given topic. Any challenge had to be supported by a written justification. The challenge treatise was circulated, and if two of three of the voting IPC councillors affirmed the challenge, then the topic was either removed or edited appropriately. The 21 topics as selected by the previous rounds of voting and the challenge round were deemed the consensus prioritization list (Table 1). All 21 summary briefs that resulted from the IPC Delphi process are available in full at http://www.psoriasiscouncil.org/Delphi2014. International Psoriasis Council (IPC) prioritization of research projects – Delphi methodology. The International Psoriasis Council's top research priorities The International Psoriasis Council's top research priorities Data are presented as mean ± SD for each of the research priorities (Table 1). Implementing three rounds of voting led to a consensus on research priorities. The assembled priorities encompass the wide gamut of psoriasis‐related issues, ranging from basic research on disease pathogenesis, genetics and natural history of disease to the optimal use of treatments and the use of biomarkers to identify nonresponders to treatment. In addition, there emerged a strong interest in paediatric populations, a need for better understanding of the global epidemiology and natural history of disease, those with mild‐to‐moderate disease, disease subtypes and those who have exhibited a suboptimal response to treatment. Taken together, the outcome of this IPC Delphi prioritization process both validates and extends prior efforts to identify the key research gaps and needs for psoriasis.1 5 The Delphi methodology has several limitations. Admittedly, certain topics deemed very interesting to the outside observer might have been omitted from the top 25 topics. This may relate to the fact that the voting IPC councillors are overwhelmingly academic clinical dermatologists, or have specific scientific interests that do not perfectly align with the greater community of dermatologists or of other medical disciplines that did not vote in this exercise. Also, although there was representation in the process from 73% of IPC councillors from 25 different countries, there may be local‐level important differences to which our sampling and statistical analysis was not sufficiently sensitive. Furthermore, although the voting councillors represent different countries, they cannot speak for the entire clinical and scientific community of those countries or the rest of the world. That acknowledged, our approach in assembling a restricted group of experts to develop a research agenda has been used by others and found to result in recommendations consistent with the larger community.6 7 Finally, our method neglected the voice of patients, and future such efforts would be strengthened by their inclusion. In conclusion, the data and perspectives presented might serve to influence decision making in research funding today for those private foundations and public organizations interested in combating psoriasis and its comorbid conditions. Furthermore, the IPC's research network will continue to monitor and highlight ongoing psoriasis research needs with a view to establishing a robust platform on which grass‐root‐level researchers can build as they seek to justify their projects to funding authorities. By developing this research agenda, investments and research efforts can be targeted to those areas that will have the greatest effect on a better understanding of psoriasis. We wish to thank the following people for their contributions: the IPC councillors collectively for idea generation and voting through multiple rounds of the Delphi methodology; David Stark for developing the internet‐based user interface and for statistical analysis and presentation of results; April Armstrong, Hervé Bachelez, Andrew Blauvelt, Wolf‐Henning Boehncke, Marc Boucier, Arnon Cohen, Johan Gudjonsson, Alexa Boer Kimball, Charles Lynde, Ulrich Mrowietz, Ruth Murphy, Mark Pittelkow, Jörge Prinz, Lluís Puig Sanz, Ricardo Romiti, Robert Sabat, Gail Todd, Ron Vender and Richard Warren for contributing abstracts for the top 25 research priorities. C.E.M.G. is National Institute for Health Research Senior Investigator. Funding sources: Corporate sponsorship was provided to the International Psoriasis Council by AbbVie, Amgen, Eli Lilly, Galderma, Janssen Biotech, Novartis, Celgene, LEO Pharma, Pfizer and Sandoz. The sponsors had no influence on the Delphi process and its results, nor the content and viewpoints in this article. Conflicts of interest: B.E.S. has received fees for speaking, consulting or for acting as an advisory board participant for Amgen, AbbVie, Janssen, Celgene, Dermira, Eli Lilly, Forward Pharma, Pfizer, Maruho, Medac, Merck, Novartis, Leo Pharma and Xenoport; is a scientific director for the Corrona Psoriasis Registry; is a board member of the International Psoriasis Council (IPC); and the University of Connecticut also receives fellowship grant support from Janssen and AbbVie. P.W.T. has served, or is serving, as a consultant or employee for the IPC, AbbVie, Baxter Healthcare, Incyte Corporation, Johnson & Johnson and Wyeth. C.E.M.G. has received honoraria and/or research grants from AbbVie, Actelion, Amgen, Janssen, LEO Pharma, Lilly, MSD, Novartis, Sandoz and UCB Pharma. J.N.W.N.B. has received honoraria and/or research grants from AbbVie, Amgen, Janssen, Lilly, Novartis and Pfizer. S.J.O. has previously served as an employee for Centocor/Janssen and Genentech, and is currently the Chief Executive Officer of the IPC.

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