Patient and public contributors have been central throughout the programme. This research topic was prioritised by patients and health professionals in a James Lind Alliance Priority Setting Partnership and builds on years of experience in providing information to families with eczema from the Nottingham Support Group of Carers of Children with Eczema, co-led by public contributor Amanda Roberts plus co-applicants Hywel Williams and Sandra Lawton.
Public contributor co-applicants have been involved in all aspects of research design, programme management, intervention development, systematic reviewing, protocol development, trial management, and implementation and dissemination work. Specific examples include the following:
- Provided advice and input on participant recruitment strategies.
- Reviewed all participant information sheets and consent forms to determine whether wording was likely to be appropriate for the target population.
- Pushed the research team to ensure that a plan was in place to ensure the sustainability of the intervention beyond the end of the grant.
- Contributed to the interpretation of study findings in all workstreams.
- Involved in co-authoring all publications and other outputs such as blogs and press releases from the programme.
- PPI co-applicant Amanda Roberts co-wrote a blog in the BMJ in October 2019 titled ‘Diverging views on eczema treatments – promoting shared understanding between doctors and patients’.
- PPI co-applicant Amina Ahmed co-wrote a blog in the BMJ in July 2019 titled ‘Patient partnership in an academic research unit’.
- Attended and facilitated stakeholder events.
We also undertook wider PPI throughout the programme. Additional public involvement was sought through the Nottingham Centre of Evidence-Based Dermatology patient panel who provided input at various stages of the programme. The online interventions were co-produced with a diverse group of public contributors and other key stakeholders. We worked closely with our PPI co-applicants, another public contributor Kate Henaghan-Sykes who is the parent of a child with eczema, and two young people with eczema who joined the development group.
Several stakeholder events were held throughout this programme. In September 2019, we held a stakeholder meeting in London, attended by 34 people including representation from people with eczema, parents/carers of children with eczema, health professionals and representatives from eczema charities. This meeting primarily focused on sharing and discussing findings from our systematic reviews on the best and safest ways to use TCSs for eczema, which is a potentially sensitive topic due to common concerns people have about the safety of TCSs. In 2021 we held a series of smaller, virtual stakeholder meetings with patients, parents, primary care clinicians and secondary care clinicians to discuss and refine key messages from the Cochrane review on TCS safety and efficacy and approaches to dissemination. Thirty people attended these meetings. As a result of discussions in the workshops, we also organised a dedicated workshop targeted to those individuals with an interest in TCS withdrawal; 18 people attended this additional workshop.
Throughout this programme we worked closely in partnership with the two main UK eczema charities, NES and EOS. The chief executive officers of both NES and EOS were members of our Programme Steering Committee and charity representatives attended our stakeholder events. NES and EOS have also endorsed www.eczemacareonline.org.uk and have been active partners in disseminating the intervention by promoting and linking to it from their websites.
Public contributors have attended and presented findings from the ECO programme at academic conferences. PPI contributor Kate Heneghan-Sykes has gone on to a role as core PPI in the Primary Care Research Centre, University of Southampton, and PPI contributor Amanda Roberts has successfully secured a NIHR Programme Grant as co-lead with Professor Kim Thomas to conduct rapid citizen science-led trials for eczema [Rapid Eczema Trials programme grant (NIHR PGfAR 31466)], which aims to address the balance of power between researchers and public contributors in eczema research.