Patient and Public Involvement and Engagement (PPIE) are increasingly viewed as a vital component of any research proposal. These not only inform us of the feasibility of a study but also ensure the research we do is relevant and important to our patients. On the 23rd June we hosted a PPIE event in Manchester called “All about Alopecia” funded by the University of Manchester’s BRC funding programme and supported by Alopecia UK. This eventful and productive meeting brought together clinicians, researchers and people with various types of alopecia in a free day event.
Information giving and gathering was shared in a variety of settings running in parallel, including a rolling programme of interactive talks, focus group work, a mindfulness session, an art project and a central “market place”. Two workshops ran throughout the day (“ETAAP” (Early Treatment for AA Prevention) and “ROMA” (Refining Outcome Measures in AA)) that will hopefully help improve trial design for future studies.
The market place was a popular component of the day allowing people with hair loss to speak with researchers and clinicians and take part in a number of activities, including feasibility of self-SALT scoring and rating the recent hair loss PSP outcomes. Stalls included a clinical and research area to discuss previous and current studies, patient representatives to chat and shared tips on hair makeup techniques and stalls from TRENDCO (local wig provider) and MASUMI head wear where they showcased their products and offered advice. Alopecia UK kindly supported the event and sent members of their team. We particularly thank members of the BHNS who gave up their time to support the day, including Susan Holmes, Abby MacBeth (and the ROMA study group) and Andrew Messenger. The day ended with a prize draw with the first prize winner leaving with an Amazon Echo.
Feedback from the day was generally very positive. For many in attendance this was the first time they had spoken with other people with hair loss in a safe non-threatening environment. Will we do it again? Yes – probably, but not for a couple of years to give us chance to recover!
Manchester (August 2018)