I have diverse experience, having been involved in the voluntary sector since 1993. I have held the posts of coordinator of the Skin Care Campaign at the National Eczema Society, general manager at Teaching Aids at Low Cost, an international healthcare training and education NGO and Chief Executive of the Psoriasis Support Trust. I also co-founded, and jointly managed the Psoriatic Arthropathy Alliance (a charity) with my wife Julie, following my own diagnosis with psoriatic arthritis.

During this time, I have been a patient advocate, and given presentations on the patient perspective in Europe and the US, written and published articles, developed awareness campaigns and been involved in the development of both quantitative and qualitative research.

I am currently Chief Executive of PAPAA – The Psoriasis and Psoriatic Arthritis Alliance a UK patient charity. Prior to moving into healthcare advocacy, I worked in commercial business. I am also involved in a number of committees and agencies (including NICE and the MHRA) as a patient or lay member, combining my own personal experience of having both psoriasis and psoriatic arthritis with that of those the charity represents. I have a keen interest in social inclusion, equality issues and like to champion the ordinary person’s views, by encouraging individuals to engage and have a voice.

An introductory guide for members of the public who are considering active involvement in NHS, public health or social care research.

20 pages

Please note that benefits guidance and tax legislation been subject to considerable change/reinterpretation since 2019. Any INVOLVE documents referring to the payment of involvement fees may now be out of date and are pending a review during 2020. INVOLVE’s guidance should not be substituted for professional advice, and INVOLVE accepts no liability for decisions or actions taken as a result of its guidance. You are always recommended to take your own tax, finance or legal advice.

In this issue:
• The Sharebank – working together to support public involvement in research
• INVOLVE Coordinating Centre News
• Interesting articles
• A Study SHARED
• Involving parents and adolescents in research: the Kids FIRST study
• Patient Led Research Hub – a New Initiative to Foster Patient Led Research
• Noticeboard

In this issue:

• Introduction from Zoe Gray, Dirtector of INVOLVE
• INVOLVE Coordinating Centre news
• Benefits Advice Service
• Understanding the research patient experience: results of a participant experience ‘OK to ask’ post card questionnaire undertaken by UK Clinical Research Facilities
• Helping researchers to produce better patient information sheets
• Noticeboard