Over 170 AMRC members and guests from the health and medical research charity world joined AMRC for our 29th annual conference. Focusing on the changing landscape for medical research and the role of patients, the agenda highlighted the essential role of charities in health and medical research, and gave moving insights into patients’ perspectives.
AMRC’s CEO Aisling Burnand kicked off the day with the thought: “there’s no single way or right-way to collaborate”. Recounting numerous examples of successful patient-centred collaborations, she called on the sector to rally round its common cause and put patients at the heart of research.
“We’ve done great things in the past year, and together we can do even better,” she said.
What the future might hold for health
Following on with the patient-centred theme, Halima Khan spoke about the Nesta Health Lab’s work putting people at the centre of how we think about health, care and ageing. In the NHS in 2030 Halima described a long-term view of what might be possible if current changes reached their full potential: focusing in particular on using new knowledge differently including data and digital technology; and the potential of people-power represented by patients and professionals, carers, families and communities, to not only help people better look after their own health, but also to form connections and networks to contribute to other peoples’ health.
Halima identified four future trends: precision medicine; health knowledge commons (use of smart phones and wearables to manage symptoms and to produce high-quality aggregate data for research); health by and with people; and using behavioural insights more widely. In closing, Halima highlighted charities’ influence – individually and collectively as a sector – and emphasised that the people and patients they represent are their greatest resource.
A new landscape: a growing role for medical research charities
George Freeman MP, the Minister for Life Sciences, opened his keynote address by applauding the medical research charity sector for its extraordinary work advocating for patients, raising money and funding research. In a wide-ranging speech, he spoke with passion about putting patients at the heart of research. He described a changing research landscape with targeted medicines and genomics transforming the development of drugs, devices, technology and diagnostics. This change creates an opportunity for patients and the charities that advocate for them, as long as innovation can start with what patients need and involve them throughout the development and regulatory process. The minister shared his mission to bring new voices to the ‘top table’ – and extended an invitation to AMRC and medical research charities to have a stronger voice in the sector, alongside big pharma, medtech, devices, diagnostics, and digital technologies.
Moving on to the NIHR, George Freeman described it as “the jewel in the crown of the life sciences landscape”. A nationwide platform for clinical research is crucial in the new landscape of clinical, translational and patient-centred medicine.
Speeding up access for patients
Next up was a panel discussion on the Accelerated Access Review (AAR), chaired by Nicola Perrin, head of policy at Wellcome Trust. Sir Hugh Taylor, AAR Chair opened with an overview of the five propositions from the interim report. Sir Hugh said it was crucial that patients be given a stronger voice at every stage of the innovation pathway; getting that element right will direct innovation to the outcomes that matter most to patients and give further impetus to earlier trials and pilot products.
The panellists Dr Virginia Acha, executive director research, medical and innovation, ABPI, Hilary Newiss, Chair, National Voices, Eric Low, chief executive, Myeloma UK and Dr Stuart Dollow, founder of Vermilion Life Sciences agreed that the AAR should be focusing on patient-centred research. It was also clear that the AAR offers an opportunity for the UK to reframe its position on new medicines and take leadership in this area.
Eric Low emphasised that this programme needed to be different from what the UK has seen before; should have specific focuses rather than trying to do everything and should be future-proofed, something the panel all agreed upon. Virginia Acha highlighted the issue of helping NICE have a greater breadth and greater resources in order to fulfil its proposed new activities.
A patient’s perspective
Patients should, and do, have a powerful voice. In this session we heard a personal account from Irenie Ekkeshis, who in 2011 contracted a rare eye infection. Irenie spoke of the effects this had, not only physically but also mentally and how her illness and the unanswered questions about her condition propelled her into a role campaigning for greater awareness of her condition. She became involved with Fight for Sight’s Sight loss and vision priority setting partnership with the James Lind Alliance.
“I suddenly felt listened to for the first time since becoming ill,” said Irenie. “It made me feel that I’d done something important, something impactful, something meaningful, something that might make a difference, something that might prevent others going through what I’d been through.”
Patient data: faster progress and getting it right
‘How can we get faster progress on the use of patient data to improve health, care and research: and get it right?’ was the topic of the next panel discussion, which opened with remarks from Dame Fiona Caldicott, National Data Guardian. Dame Fiona discussed the National Data Review currently underway. A vital part of the review is data security and developing a consent model that’s easily understood by all members of the public and that allows them to be clear about how they want their data to be used. Dame Fiona noted it is essential the culture around patient data is changed and that clinicians need to have a better understanding of how NHS data can be used for patient and service benefit. The panel Professor Mike Pringle, former President, Royal College of General Practitioners and Michael Chapman, head of cancer intelligence and impact, Cancer Research UK then discussed how to get faster progress in this area, emphasising that building the trust of both GPs and the public is essential.
Venture philanthropy: a new funding model for translational research?
The last panel showcased some new funding models from the UK and around the world.
Ed Owen, chief executive at Cystic Fibrosis Trust began discussions relating how for many years the charity followed the classic research charity model yet found that while academics do excellent research; this often doesn’t lead to treatments for patients. The Cystic Fibrosis Foundation in the US has found venture philanthropy to be more innovative – for example the first ever precision medicines for cystic fibrosis would not have been possible without the Cystic Fibrosis Foundation’s seed-funding of Bio Pharma. The Cystic Fibrosis Trust is now looking at a number of different mechanisms that could be used to fund translational research.
Nick Johnston, managing director, Perella Weinberg Partners, then discussed his work helping charities to discover different funding models. He described a range of funding approaches from traditional grant funding through to venture capital, with venture philanthropy as an area where charities could target their research investments into products of companies that were at the early stages of developing new treatments, diagnostics or therapies for people with their condition. In the ‘venture philanthropy’ position, charities would be able to ‘de-risk’ projects, and might also benefit from a revenue return.
Kate Bingham, managing partner, SVLS introduced a venture capitalist point of view, discussing the new Dementia Discovery Fund – a collaboration between charities, government and pharma – and what the fund intends to achieve. She commented that pure venture capital (VC) looks for a return on investment, by marrying the business skills of picking projects with a high probability of succeeding. While a VC fund was unlikely to be appropriate for every charity, adopting some of the methods for ‘picking winners’ might be useful. The most important thing to remember was that there were many models, and a charity should find the ones that best suited their needs.
Dame Stephanie Shirley then gave the final keynote of the day. Alluding to her early life coming to the UK as a refugee, she gave an inspiring speech about her years working as an IT researcher for the government, forming her own IT company and her involvement in autism research. Dame Stephanie discussed her personal connection to autism regarding her late son and how it led her to found and lead the medical research charity Autistica in 2004. She is now part of a three year think-tank to expand autism research and has supported around 100 autism projects totalling £50m. She also discussed one of her latest ventures in assisting the IT industry in getting one million people on the autism spectrum into paid work in the IT sector globally by 2020.
Dame Stephanie also spoke about the AMRC and how useful it has been, particularly in terms of its rigorous peer review process, in ensuring her charity Autistica maintains the highest standards in research and in being a collective voice for the medical research charities.
The association is a strong collective voice for medical research and health charities in the UK and that ensures that research funding is well directed and focussed on improving lives.
Additionally the association tends to help to sustain a public generosity by having its member charities learn to demonstrate how research helps people.
Donors look to the AMRC as a form of due diligence and several grant-givers would not look at Autistica before we achieved [AMRC] membership.
The day finished with the annual general meeting for all AMRC members.
For more information on the day take a look at our video and audio clips.