ABPI names new members of its patient advisory council
Current members of the ABPI's patient advisory council
The Association of the British Pharmaceutical Industry (ABPI) has added five new patient organisation figures to its patient advisory council, set up to provide patient perspective on its policy-making.
The council was set up in 2021 to allow “full, frank, and open” discussion and information-sharing between senior patient representatives and the ABPI’s 18-strong board and executive team, to make sure that patient voices are heard in its decision-making.
Since its inception, the council has worked with the ABPI board to advise on issues including health data, equitable access to innovative medicines, and clinical research in the UK.
The new members – all chief executives of their respective charities – are Clare Jacklin of the National Rheumatoid Arthritis Society, Hilary Evans of Alzheimer’s Research UK, John James of the Sickle Cell Society, Samantha Barber of Gene People, and Sarah Woolnough of Asthma + Lung UK.
The latest appointees add to current representatives Sarah Sweeny of National Voices, Tom Nutt of Meningitis Now, and Nicole Perrin of the Association of Medical Research Charities. and takes the council to its full complement of eight leaders from the patient charity sector.
Representatives on the council serve 18-month terms, and the new appointments have been made following the departure of Duchenne UK’s Emily Crossley, Cancer52’s Jane Lyons, Jayne Spink of Prostate Cancer Research, and the Mucopolysaccharide Diseases Society’s Bob Stevens.
“We are thrilled to welcome this new cohort of members to our patient advisory council,” said the ABPI’s head of strategy, research, and partnerships, Colette Goldrick. “Their input on behalf of their respective charities will help inform the ABPI board and ensure the patient perspective is front and centre of industry decisions.”
The launch of the council delivered on the first commitment in the ABPI’s Patient Engagement Strategy document, which was launched in June 2021 and is aimed at fostering a patient-centred pharma industry culture.
Along with drawing on the council to help develop and shape the ABPI’s business plan, the aims are to co-develop training programmes on patient communication to avoid jargon and make sure messages resonate with patients, include patient representatives on internal and external briefings, and incorporate their views in induction programmes for new industry leaders.
While the pharma industry has been talking about patient centricity for many years, there does seem to be a bit of a disconnect – or “optimism gap” – between the ambition of companies and the reality on the ground.
A recent survey of healthcare professionals revealed that only 45% of them felt that biopharma companies were embodying patient centricity at a high level.
