The Hidradenitis Suppurativa Priority Setting Partnership

Ingram et al. (2014) full text summary PDF

For which topic were research priorities identified?

hidradenitis suppurativa

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

Hidradenitis suppurativa (HS) has been neglected by medical researchers and society in general, despite being a relatively common, painful, chronic skin disease. In this situation, there is a need to raise the profile of HS with potential research funders and to prioritize research questions that matter most to those affected by HS, namely patients and carers and their treating clinicians.

What was the objective?

to generate a top 10 list of Hidradenitis Suppurativa research priorities, from the perspectives of patients with HS, carers and clinicians, to take to funding bodies

What was the outcome?

a ranking list of 10 research questions

How long did the research prioritization take?

March 2013 - December 2013

Which methods were used to identify research priorities?

JLA method

How were the priorities for research identified exactly?

Step 1: setting up PSP: identifying stakeholders. Step 2: collecting research uncertainties: via survey, participants were asked to submit up to five uncertainties regarding HS and its management, 1495 uncertainties submitted. Step 3: data processing: responses collated, cleaned, grouped into indicative uncertainties, during teleconference steering committee invited to highlight original uncertainties not fully captured by indicative uncertainties resulting in creation of several additional indicative uncertainties, final list of indicative uncertainties compared with systematic reviews to check for uncertainties that had already been answered by evidence, U.K. DUETs also checked, all indicative uncertainties kept. Step 4: interim ranking: each respondent asked to identify top 10 priorities for future HS research and to rank them, steering committee agreed to take forward the 30 highest-scoring indicative uncertainties. Step 5: final prioritization: workshop: group discussions with nominal group technique: small group rankings, second round of small group discussions and rankings, followed by plenary session to agree on top 10.

Which stakeholders took part?

Patients with HS, carers and clinicians. Survey: 57% patients with HS and carers, 24% dermatologists, 12% GPs, 4% dermatology specialist nurses and 3% other HCPS including surgeons and psycho-dermatologists. Interim ranking: 371 participants: 50% HS patients and carers. Workshop: 4 facilitators and 22 HS stakeholders: 9 patients and carers, 7 dermatologists, 3 dermatology nurses, 2 GPs and 1 plastic surgeon.

How were stakeholders recruited?

Participation of each stakeholder was achieved by contact from the relevant member of the steering committee, which ensured dissemination of PSP surveys to all stakeholder groups. The first survey was publicized in electronic newsletters routinely sent to members of the stakeholder associations, on the U.K. DCTN website and in HS articles published in primary care dermatology journals. In addition, the HS Trust placed a link on its website and publi cized the PSP using social media, including a Twitter feed. As for survey 2, those who responded to survey 1 and everybody who did not respond to survey 1 were able to participate.

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of 5 patients with HS and carers (including two representatives of the HS Trust U.K. patient organization), 6 dermatologists (including two trainees), 2 dermatology specialist nurses, 1 plastic surgeon, 1 general practitioner, 1 JLA representative, and 1 administrator. The members oversaw the process and were involved in data processing.