Patient leaders join new pharmaceutical industry advisory council

Eight leaders from across the patient and health charity sector have been named to the ABPI’s new Patient Advisory Council.

In a search that commenced in June, the new Council will bring together industry and patient advocates to help steer and broaden the Association’s strategic thinking, ensuring a more patient-centric future strategy, policy, and priorities.

The new members are:

Charlotte Augst from National Voices, Emily Crossley from Duchenne UK, Jane Lyons from Cancer52, Dr Tom Nutt from Meningitis Now, Hilary Reynolds from the Association of Medical Research Charities, Jayne Spink from Prostate Cancer Research, Bob Stevens from the MPS Society, and Neil Tester from the Richmond Group.

The Patient Advisory Council members will join the ABPI’s Board meeting today [Tues 7 September] for the first time.

Announcing the first members of the Council, Colette Goldrick, Executive Director of Strategy, Research & Partnerships at the ABPI, said:

“We have had an overwhelming response to our search for a new Patient Advisory Council, and we are really proud to name these eight passionate experts as our inaugural members. Each is a leader in their community, and we are really looking forward to hearing what they have to say and how we can work together towards meaningful change.”

Ben Osborn, President of the ABPI, said:

“The Council was formed with the sole purpose of ensuring the Association, our Board and the industry at large has a greater understanding of the patient experience, and how our work can help improve the lives of patients and their families. We’re excited to get started.”

Council members will provide patient perspectives across policy topics relevant to both industry and patients, such as outcomes-focused healthcare, medicines pricing, patient engagement in health technology assessment (HTA), healthcare data, and collaboration.

Charlotte Augst is the Chief Executive Officer of National Voices, a coalition of health and care charities in England with more than 180 members covering a diverse range of health conditions and communities. She said:

“National Voices’ members are a diverse range of organisations passionate about improving people’s experiences of health and care. Joining the inaugural Patient Advisory Council represents a fantastic opportunity to give voice to their views and help strengthen the ABPI’s focus on what people who use health and care services really need and want.”

Emily Crossley is the Chief Executive Officer and co-founder of Duchenne UK (DUK), the leading Duchenne muscular dystrophy (DMD) charity in the UK working to find effective treatments for DMD and end its devastating impact. She said:

"Duchenne UK is committed to ending Duchenne and working with all parties to get there. That's why I'm pleased to join the new Council. DUK's ground-breaking collaboration with the pharmaceutical industry, Project HERCULES, has already shown what patient-led initiatives can achieve. "I look forward to taking our experiences to the ABPI to get the best outcomes for patients."

Jane Lyons is CEO of Cancer52, an alliance of more than 100 charities, united in improving the future for everyone affected by rare and less common cancers. She said:

“We are delighted to be represented on this Council as our key role is to ensure the voice of people with rare and less common cancers is heard at the highest possible levels of policy and decision making and influencing bodies.

“The ABPI is one such body; its members are all committed to putting the patient at the heart of what they do; and there is so much that the ABPI and its members can do to help charities and patients make that happen, and we welcome the opportunity to help steer that work.”

Dr Tom Nutt is CEO of Meningitis Now, the first meningitis patient group in the world, founders of the meningitis movement and the only charity dedicated to fighting meningitis in the UK. He said:

“I’m delighted to join the Council and look forward to participating fully in its activities. As CEO of Meningitis Now, I expect to draw on the charity’s extensive research and campaigning that has already helped with the development and introduction of five life-saving vaccines now available on the NHS – reducing the number of UK meningitis cases every year since the 1990s.

“By sharing the knowledge and insights we learn every day as the people’s voice for meningitis, and by working with other leading patient groups, I hope we can shape and positively influence the vital work of the UK pharmaceutical sector.”

Hilary Reynolds is the CEO of the Association of Medical Research Charities, comprising over 150 research-based charities working on common and rare diseases. She said:

“The past year has showed the importance of collaboration within the clinical research ecosystem more than ever. “We welcome the opportunity to be part of ABPI’s patient advisory board and look forward to building a more patient-centred approach to clinical research that truly listens and takes into account the views and needs of patients.”

Jayne Spink is Translational Research Director at Prostate Cancer Research, a charity determined to provide a better future for men and their families. She said:

“I am delighted to have been appointed and to have this opportunity to bring the experiences and preferences of prostate cancer patients to the heart of ABPI’s strategic thinking. I’m looking forward to working with fellow council members, each of whom brings a tremendous wealth of experience.

“When patients are viewed as equal stakeholders in the medicines and healthcare ecosystem, the result is innovation that delivers outcomes that matter to patients.

“I hope that the work of the council will help to increase recognition of the value of patient experience, foster patient-centric approaches, and help create more opportunities for cross-sector collaborations.”

Bob Stevens is CEO of the Society for Mucopolysaccharide Diseases (MPS Society), which provides professional support to individuals and families affected by MPS, Fabry, and related conditions. He said:

“Having two sons diagnosed with a rare disease changes your perspective and priorities in life. I started my career in the charity sector because I wanted to bring together my family experiences of a ‘rare life lived’ and commercial attributes to improve the lives of those most marginalised in society and help create a more sustainable financial future for patient organisations both in the UK and globally.

“I want to use my role on the Patient Advisory Council to continue working as a patient representative for MPS.”

Neil Tester is Director of the Richmond Group, a coalition of Age UK, Alzheimer’s Society, Arthritis UK, Asthma UK/BLF, Breast Cancer Now, British Heart Foundation, British Red Cross, Diabetes UK, Macmillan, Rethink Mental Illness, the Stroke Association and the Royal Voluntary Service (RVS). He said:

“The Richmond Group brings together major national charities to focus on how we can improve experiences and outcomes for people living with long-term conditions – increasingly multiple conditions – as well as on the links with health inequalities and the need to make the long-term recovery from COVID-19 really effective for the whole population.

“Innovation from the industry will be central to this agenda and I’m pleased to be part of this first step in helping to make sure that what matters most to people drives the ABPI’s strategic approach.”