Perspectives on oncology personalised healthcare: Richard Stephens (transcript)

As we near publication of our round table video debate on the impact of personalised healthcare in oncology and beyond, Paul Tunnah speak with leading global in vitro diagnostics expert Mya Thomae to hear how pharma companies and diagnostics manufacturers can collaborate more closely.

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. Below is the transcript from the video discussion between Paul Tunnah and Richard Stephens, where he explain 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)

Interview transcript:

PT: How are patients getting involved in drug development?

RS: We have two methods of doing it and the first is the formal method. In cancer, clinical trials in the NHS are delivered through networks and they are designed and monitored by clinical studies groups, so there is group for each tumour type (lung, breast etc.) and other groups for cross-cutting themes like palliative care, for example. Each of those groups has two consumers, or patient reps, sitting on them, so consumers are involved with looking at trials from the moment they are designed all the way through to being delivered and, of course, the reporting of results and the change of clinical practice. So we have that structure.

The second way is a new approach that we are trying. We formed a group of patients who are interested in working with drug companies, and specifically with AstraZeneca. What we are going to do is to set up a patient panel which will meet either over the phone, or face-to-face, or even online, but it’s a group of people (not one or two) and they will meet with AstraZeneca’s researchers to talk about a whole range of trials and issues such as ‘what’s the best time to recruit someone after they’ve had bad news’ – how do you make that approach?


“We formed a group of patients who are interested in working with drug companies”

It’s around trying to make these trials more attractive to patients, because if the product works it’s in our interests to make it available to patients as quickly as possible. So that means the trial should recruit to time and to target. That also does help AstraZeneca, because they are paying for it, but our motive is [that] drugs companies make products that, if the trial works, are useful to patients. So we want to try and get them made available as swiftly as possible.

PT: Do patients understand the downstream process from their clinical trial?

RS: Most of us probably do not, because the process of getting a drug from the moment it’s designed to actually accepted as a general treatment for patients is a long and complicated one. Even after you’ve got the drug designed and tested in a few people, and tested in more people, and then perhaps multi-nationally to get the patient population up to the right number, you still then have to go through the licensing process. And even after the trial people have got to run it and deliver it as a treatment, and so on, and the company has to market it and manufacture enough of it.

All those things have to be sorted out by other people, so there’s not really room for patient involvement there, so it is an incredibly complicated process. We do have this misfortune, in this country [UK] especially, that medical research has often picked up a bad name, because of mistakes or things done – not very often, and by very few people – but they have big impact, and sometimes there is a lack of trust.

PT: How can the pharma industry make clinical trial participation easier?

RS: Drugs companies love to do lots and lots of tests – blood tests, taking tissue types and scans, and sometimes there comes a point where we want to say ‘enough is too much’. Can you reduce the number of tests, can you reduce the number of scans, can you reduce the number of times we have to go off to someone else’s hospital?

PT: What needs to happen with patient data to support personalised healthcare?

RS: We need to create a situation where people understand what data is actually held, and I think many patients, including myself, are quite surprised by just how much is held and used without us knowing about it, and also where people are much more ready to give consent where it’s needed for use of that data. Many of us now appreciate that if we have a supermarket loyalty card, the supermarket knows what shopping we buy. What we don’t necessarily understand is the interpretation that people can get from that and the intelligence that people can get about our lifestyles and our other habits.


“Medical research has often picked up a bad name, because of mistakes by very few people”


I think the same is also true with medical records. Many patients don’t quite understand how much those records can be linked, and sometimes are linked, and often we don’t realise it because we ourselves have to repeat our own story every time we see a new doctor. But often that information is available, and especially when it’s hard data and things like blood tests and blood pressure readings, diagnosis, scans – all of that can be held electronically.

PT: What is the best way to drive collaboration between patients and pharma?

RS: I don’t think we know what the right collaborative model is, because we haven’t found it yet. What we have got is lots of things that seem to work. A very small example would be [that] last November we held what we called a ‘dragon’s den’, where we, as a group of eighty patients at a conference, invited researchers to submit proposals in advance and come and talk to us about their research ideas. All five groups of researchers who came to us, including three from AstraZeneca, have given us great feedback about that. In a couple of cases they’ve completely rewritten their ideas about research and have completely rethought how they would deliver it, which is absolutely brilliant.

That worked, [but] it’s unrealistic to say ‘let’s do one a month’. That worked on that occasion, you might not even be able to do it every year because it would just get stale. If we don’t know what the right model is, then we just keep looking for it. I don’t think there ever will be one model; I think there will be a range of solutions from a range of people, in a range of different circumstances. The right one is the one that works.

Other links:

Oncology shaping the future of personalised healthcare media hub

Video of this interview

Perspectives on oncology personalised healthcare: Mya Thomae (transcript)



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.

For more information about Richard’s work with the Consumer Liaison Group please visit:

NCRI Consumer Liaison Group (CLG) website

How should patients be involved in pharma drug development?