We are delighted to be able to introduce to you our two keynote speakers for the 2017 PSI Conference, David Spiegelhalter and Richard Stephens. Richard will open the conference by sharing with us a patient’s perspective and David will present on the Tuesday morning. For more information about our Keynote Speakers, you will find their biographies below.
Monday 15th May 2017, 09:30
Richard Stephens has personal experience of two cancers (Hodgkin’s Lymphoma and recurrent basal cell carcinomas), a heart emergency, and several other health challenges. He has participated in four interventional clinical trials and eight other studies.
Richard Chairs the NCRI’s Consumer Forum and serves on strategic groups for NIHR, NCRAS, MRC CTU, NHS England and Genomics England. He sits on Cancer Research UK’s main funding committees, and has roles with Eupati and with industry, including ad hoc consultancy work for Astra-Zeneca.
Richard was the patient representative on the Independent Cancer Taskforce that produced the 2015 Cancer Strategy for England, Achieving World Class Cancer Outcomes, and brings the “slightly uncertain voice of the partly-informed patient” to NHS England’s Cancer Patient Experience Advisory Group.
Richard is a founder member of the AllTrials campaign and the useMYdata movement. He is the joint Editor-in-Chief of BioMed Central’s Journal of Research Involvement and Engagement. In his previous life he worked in social housing and education. In his spare time he enjoys regular battles of wills with a gym treadmill, and sleeping.
40 years of PSI - From Patients Staying Ignorant, Through Patients Showing Interest, to Patients Starting Involvement
The past 40 years have brought huge changes in the UK’s health relationships. Whilst much political and managerial discussion has been spent on formal contractual relationships of commissioners and providers, and on structures, funding and performance, the impact of social change has also taken effect. Concepts such as “patient choice” and the need to provide timely and accurate information to patients to support that choice, are recognised and embedded in constitutions and charters, if not yet delivered across all diseases and all locations. Meanwhile the wider implications of “consumerism” and “active citizenship” are bringing the benefits and challenges of Patient Involvement into the clinical research world, and especially into clinical research delivered in the NHS.
This presentation is based on the personal views on the author’s journey through healthcare over the past 40 years. From learning at the breakfast table with mum, a nurse trained in the war, through sports injuries and a first diagnosis of cancer in 1998, to more diagnoses, more time as a patient, and active involvement as a patient advocate in health research since 2002.
This presentation will explore issues raised by the author’s experience of cancer treatments and cancer research. It will cover his own time as a carer and as a patient, including his participation in 4 clinical trials and 9 observational studies. However it will focus on his learning from 14 years of Patient Involvement in research, with NCRI and NIHR, RfPB and HTA, UCL and MRC, with Pharma and biotechs, charities and universities, with Eupati and patient organisations and health trusts in the UK devolved nations, with studies, programmes and national bodies, in prevention, diagnosis and treatments, and above all, his views as the Patient Member of the Independent Cancer Taskforce, one of the authors of the current national Cancer Strategy, and one of the prime exponents that the patient experience is as important as the clinical outcomes.
"I grew up being told that patients should not argue with Doctors ... Now I am telling individual patients to research their own illnesses and put evidence in front of their doctors, and I tell patient groups that we should play an active and equal part on obtaining the evidence in the first place, including working with industry. In another 40 years active citizens will be looking to make contributions to research every time they are ill; the NHS will not distinguish between treatments, research and evidence-gathering, and the life sciences industry and academia will each be an integral part of our country's economy and our way of life and social fabric too. If, that is, we make the right changes and choices now.”
Tuesday 16th May 2017, 09:00
David Spiegelhalter is Winton Professor for the Public Understanding of Risk, Professor of Biostatistics and Fellow of Churchill College at Cambridge University. He leads a small team (UnderstandingUncertainty.org) that attempts to improve the way in which risk and uncertainty are taught and discussed in society. He gives many presentations to schools and others, advises organisations on risk communication, and is a regular commentator on risk issues. He presented the BBC4 documentaries ‘Tails you Win: the Science of Chance’ and ‘Climate Change by Numbers’. He was elected FRS in 2005, awarded an OBE in 2006, and was knighted in 2014 for services to medical statistics. In 2011 he came 7th in an episode of Winter Wipeout.
"Engaging without manipulating: the balanced communication of statistics"
Numbers are often deliberately presented in a way that makes them either look big, say to alarm us, or small, perhaps to reassure us. They are essentially used as rhetorical devices to influence our emotions, as any time spent listening to the radio will reveal. The challenge is to engage interest in the stats without influencing opinion in a particular direction, and I shall discuss attempts being made to do this in health and other disciplines.