Patients First: A first in many ways By Dr Cat Ball, Policy Manager, AMRC Published: 31 December 2016 On 28 November, we held our inaugural Patient Firsts conference. What a day! This year, we wanted to do something new, to take a risk and push the boundaries on what we think is critical for our sector – to put patients first. Following our visits across the pond to Partnering for Cures, we were inspired to hold an event with similar aims for a UK audience. So when the opportunity arose, we jumped at the chance. It was a first in many ways. For AMRC it marked a break from tradition – a change from our previous annual conferences and AGMs. We tried a new format aimed at a patients, carers, charities, industry and regulators as equal partners. Working in partnership is something we actively encourage so, practicing what we preach, we worked with ABPI to co-create this event. For something of this size and scale, it was unchartered waters for the both of us. Thankfully the risk paid off, with almost 300 people, 50 speakers, 6 breakout discussions, 4 plenaries and 2 ‘On the Grapevine’ informal discussions, it’s fair to say that there was a lot going on and there was a real buzz. Below we’ve captured some highlights to inspire your work and kick-start the New Year. Speakers and sessions Jane Taylor, Chair of Patient Insight Group for Arthritis Research UK, opened the conference with an emotive account of living with chronic illness and her involvement in medical research. She likened her experiences to playing a real-life version of snakes and ladders. Medical research has provided some ‘ladders’, while issues such as co-morbidity, self-image and the ‘system’ itself provided sizable ‘snakes’. On patient involvement in research, she urged that patients be included during early stages and that accessibility is important; patients must be genuine partners rather than ‘tick-boxes’. Above all, patients are people first. The second keynote of the day was delivered by Nicola Blackwood MP, Parliamentary Under Secretary of State for Public Health and Innovation. A patient herself living with a rare disease, Nicola recognised a number of the ‘snakes’ and ‘ladders’ highlighted by Jane. Nicola outlined some of the work currently underway within Government, including the recent funding announcements for R&D and the challenge on Dementia 2020. In closing, she urged patients never to stop talking. A voice familiar to many from television and radio provided our third and final keynote; Nick Robinson, former political editor for the BBC and a presenter on the BBC's Today programme. He shared the story of how that voice was almost lost and his experiences as a cancer patient. A number of breakout discussion sessions were held throughout the day on a broad range of topics featuring a variety of perspectives. Attendees were encouraged to ‘pick ‘n’ mix’ and explore a variety of sessions. Areas explored included: Involving patients in research and development; Partnerships for improving patient access to NHS research; Patient data; Emerging landscape of accelerated drug development; Putting patients in the driving seat – digital technology and health research; and The role of genomics and stratified medicine – how do we put ‘patients first’? As well as the keynote and breakout sessions, we included two ‘on the grapevine’ slots. These were informal conversations between two interesting and knowledgeable people. The first ‘on the grapevine’ session featured Professor Trisha Greenhalgh (Professor of Primary Care Health Science at the University of Oxford) and Professor Jonathan Montgomery (Chair, Health Research Authority). The second ‘on the grapevine’ session featured Baroness Delyth Morgan (Chief Executive, Breast Cancer Now) and Dr David Montgomery (Medical Director, Oncology, Pfizer) discussing charity-industry partnerships and how charities can channel the patient perspective. The conference ended with a look to the future; the final plenary session explored what we can expect from science, medicine and health research. We had a panel with a plethora of experience and expertise; chaired by Financial Times journalist Andrew Jack, this featured Professor Sue Hill CBE (Chief Scientific Officer, NHS England), Sir Harpal Kumar (Chief Executive, Cancer Research UK), Professor Duncan McHale (Vice President Head of Global Exploratory Development, UCB), Jo Pisani (Partner, PwC), and Dr Louise Wood (Director of Science, Research and Evidence, Department of Health). Transformative areas discussed included genomics, monoclonal antibody therapies and Cognitive Behavioural Therapy (CBT). Take home messages It was a busy, thought-provoking and inspiring day. A number of key themes and messages came to the fore and were aptly summarised in the closing remarks from AMRC’s Chief Executive, Aisling Burnand: collaboration is crucial; we face the challenge to get more patients involved in more trials; patients must be involved right from the start; transparency, openness and candour are vital; we need to be aware of the semantics – patients or people?; it’s important to treat the person as a whole. Next steps As the conference ended, it was clear that the words and sentiment of the day must be taken forward – how can we put patients first in practice? This is something that AMRC will encourage our members to strive for and we hope that Patients First 2017 will be part of this…watch this space! In the meantime, let’s keep working on building those ladders and enabling patients to avoid the snakes. Manage Cookie Preferences
It was a first in many ways. For AMRC it marked a break from tradition – a change from our previous annual conferences and AGMs. We tried a new format aimed at a patients, carers, charities, industry and regulators as equal partners. Working in partnership is something we actively encourage so, practicing what we preach, we worked with ABPI to co-create this event. For something of this size and scale, it was unchartered waters for the both of us. Thankfully the risk paid off, with almost 300 people, 50 speakers, 6 breakout discussions, 4 plenaries and 2 ‘On the Grapevine’ informal discussions, it’s fair to say that there was a lot going on and there was a real buzz. Below we’ve captured some highlights to inspire your work and kick-start the New Year. Speakers and sessions Jane Taylor, Chair of Patient Insight Group for Arthritis Research UK, opened the conference with an emotive account of living with chronic illness and her involvement in medical research. She likened her experiences to playing a real-life version of snakes and ladders. Medical research has provided some ‘ladders’, while issues such as co-morbidity, self-image and the ‘system’ itself provided sizable ‘snakes’. On patient involvement in research, she urged that patients be included during early stages and that accessibility is important; patients must be genuine partners rather than ‘tick-boxes’. Above all, patients are people first. The second keynote of the day was delivered by Nicola Blackwood MP, Parliamentary Under Secretary of State for Public Health and Innovation. A patient herself living with a rare disease, Nicola recognised a number of the ‘snakes’ and ‘ladders’ highlighted by Jane. Nicola outlined some of the work currently underway within Government, including the recent funding announcements for R&D and the challenge on Dementia 2020. In closing, she urged patients never to stop talking. A voice familiar to many from television and radio provided our third and final keynote; Nick Robinson, former political editor for the BBC and a presenter on the BBC's Today programme. He shared the story of how that voice was almost lost and his experiences as a cancer patient. A number of breakout discussion sessions were held throughout the day on a broad range of topics featuring a variety of perspectives. Attendees were encouraged to ‘pick ‘n’ mix’ and explore a variety of sessions. Areas explored included: Involving patients in research and development; Partnerships for improving patient access to NHS research; Patient data; Emerging landscape of accelerated drug development; Putting patients in the driving seat – digital technology and health research; and The role of genomics and stratified medicine – how do we put ‘patients first’? As well as the keynote and breakout sessions, we included two ‘on the grapevine’ slots. These were informal conversations between two interesting and knowledgeable people. The first ‘on the grapevine’ session featured Professor Trisha Greenhalgh (Professor of Primary Care Health Science at the University of Oxford) and Professor Jonathan Montgomery (Chair, Health Research Authority). The second ‘on the grapevine’ session featured Baroness Delyth Morgan (Chief Executive, Breast Cancer Now) and Dr David Montgomery (Medical Director, Oncology, Pfizer) discussing charity-industry partnerships and how charities can channel the patient perspective. The conference ended with a look to the future; the final plenary session explored what we can expect from science, medicine and health research. We had a panel with a plethora of experience and expertise; chaired by Financial Times journalist Andrew Jack, this featured Professor Sue Hill CBE (Chief Scientific Officer, NHS England), Sir Harpal Kumar (Chief Executive, Cancer Research UK), Professor Duncan McHale (Vice President Head of Global Exploratory Development, UCB), Jo Pisani (Partner, PwC), and Dr Louise Wood (Director of Science, Research and Evidence, Department of Health). Transformative areas discussed included genomics, monoclonal antibody therapies and Cognitive Behavioural Therapy (CBT). Take home messages It was a busy, thought-provoking and inspiring day. A number of key themes and messages came to the fore and were aptly summarised in the closing remarks from AMRC’s Chief Executive, Aisling Burnand: collaboration is crucial; we face the challenge to get more patients involved in more trials; patients must be involved right from the start; transparency, openness and candour are vital; we need to be aware of the semantics – patients or people?; it’s important to treat the person as a whole. Next steps As the conference ended, it was clear that the words and sentiment of the day must be taken forward – how can we put patients first in practice? This is something that AMRC will encourage our members to strive for and we hope that Patients First 2017 will be part of this…watch this space! In the meantime, let’s keep working on building those ladders and enabling patients to avoid the snakes.