Perspectives on oncology personalised healthcare: Richard Stephens

pharmaphorum introduces the final participant in our first round table video debate on personalised healthcare within oncology and beyond, Richard Stephens, as Paul Tunnah discovers what motivates a cancer patient to work with the pharmaceutical industry and help to change the drug development process for the better.

This media accompanies the round table video debate ‘Oncology shaping the future of personalised healthcare‘, sponsored by AstraZeneca.

Ahead of the round table video debate ‘Oncology shaping the future of personalised medicine’, pharmaphorum will be releasing individual video interviews with the four expert participants. Here, Paul Tunnah speaks to Richard Stephens, to hear about the work he is doing with the National Cancer Research Institute’s Consumer Liaison Group to bring the voice of the patient to the pharmaceutical research table, and how this is changing the way it does drug development.

(interview conducted July 2013)

Quicklinks:

0’25” – How are patients getting involved in drug development?

2’27” – Do patients understand the downstream process from their clinical trial?

3’36” – How can the pharma industry make clinical trial participation easier?

4’04” – What needs to happen with patient data to support personalised healthcare?

5’23” – What is the best way to drive collaboration between patients and pharma?

Other links:

Oncology shaping the future of personalised healthcare media hub

Written transcript of this interview
About the interviewee:

Richard is a survivor of two cancers and a heart emergency. He has participated in five clinical trials, nearly a dozen other research studies, and currently serves on three trial management or steering groups delivering or monitoring particular research studies. As a patient advocate and representative in health and medical research, his formal roles including chairing NCRI’s Consumer Liaison Group, and he sits on several other national and regional committees and bodies, including NIHR, NCIN, RfPB, HTA and MRC CTU.

He is a co-author of 2012’s Action On Access, a consumer-led report recommending organisational and cultural changes to encourage and support more patients to participate in research, and is an active supporter of the AllTrials campaign calling for greater transparency in clinical trial registration and reporting. Richard is one of the consumers who designed and introduced the questions on research awareness and participation for the National Cancer Patient Experience Survey, and as CLG Chair he is leading a new partnership with Astra Zeneca to set up a Patient Forum, to bring patients and the company’s researchers together to discuss trial design and recruitment methods.

The Consumer Liaison Group brings together individuals with personal experiences of cancer including patients, carers and relatives as well as representatives of cancer support organisations, researchers and other professionals with an interest in consumer involvement in cancer research as part of their roles. CLG members improve the quality and value of cancer research through consumer involvement and by working with other organisations helps to raise public awareness of clinical research and cancer research in particular. The group acts as a focal point for discussion, advice and feedback to the NCRI, NIHR and wider stakeholders on cancer research issues affecting consumers.