Roger B
Roger has been involved in health and medical research in sarcoma since he became a patient advocate in 2002. He also founded Sarcoma UK, a national charity that aims to provide information and support for patients with the condition, and raises funds for research.
Roger is married and has three daughters, aged 37, 35 and 28, and four grandsons. He is a former television producer and journalist, and has worked as a consultant with pharmaceutical companies and in education. Ethnic background: White British.
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After Roger was diagnosed with sarcoma, a rare type of cancer, he contacted the National Cancer Research Institute (NCRI) which was advertising for patient members for a clinical studies group. At his first meeting, he remembers feeling a little nervous and daunted by the professional researchers and clinicians around the table. Early on, he learned how important it was that meetings were chaired well. He explained that the chairperson needs to control the topics being discussed and ensure that everyone has a say. Even now before he attends a meeting, Roger will speak to the chair and tell them in advance what he would like to contribute. He said this is important because it means he doesn’t have to fight his way into the discussion with the professionals.
Since joining his first group, Roger has been a patient advocate on several other groups and is involved in research across Europe. He said research teams are about partnerships between various types of researchers and clinicians, and including a patient in these groups is just common sense; “it makes you wonder why it should ever been seen as unusual”. He believes patients can make professionals think twice about things they may not even have questioned before, but they need to try to be as representative as they can without losing “their own specific patientness”, which he thinks is very valuable. Roger suggested they could keep in touch with how others think and feel by remaining in contact with patient groups.
Over the years Roger’s PPI role has changed. Initially he was involved in reviewing studies, making sure participant information sheets were clearly written and easy to understand, and offering his opinion on the usefulness of proposed research projects. He has worked on the training courses run by the NCRI Consumer Liaison Group, which aim to improve patient understanding of drug trials by helping researchers and clinicians to think about how best to give information to patients in a way they will understand. Whilst he still does these kinds of things, Roger has become more involved at a strategic level, taking part in debates and discussions about the major issues of direction and management, including the development of PPI. He is keen to promote openness and transparency in research, which includes ensuring that all research findings are published regardless of their findings. He has been appointed as a scientific member of the NCRI, a title usually reserved for researchers and clinicians and thought this might be an acknowledgement of the work he has done over the years with the NCRI and also with Sarcoma UK, the national charity he founded that aims to contribute to research funding.
Although he has been involved in health research for over a decade, Roger still enjoys being a patient advocate. He said the experience has been rewarding and that he’s humbled by the prospect of making a difference in sarcoma research. Although it has been challenging and scary, patient and public involvement can be very satisfying and he thinks other people should get involved. He also encouraged researchers to use patients in their research, saying they’d never regret it.
Roger B describes rewording a patient information sheet to help it get through an ethics committee.
Roger B describes rewording a patient information sheet to help it get through an ethics committee.
Roger B said the chair has a crucial role in ensuring people’s voices are heard, so it's important that they're trained to help people find the right time to tell their story.
Roger B said the chair has a crucial role in ensuring people’s voices are heard, so it's important that they're trained to help people find the right time to tell their story.
What are the other crucial things that you sort of would say in training a Chair – what do you think they need to know?
Well, I think that issue of the patient telling their story is one. The fact that the patient will find it very difficult to chip in in the meeting because of the kind of dynamics these meetings have, so they have got to be able to bring the patient in. Ideally that's with the knowledge of the patient beforehand. Whether that's been pre-agreed between them prior to the meeting or, you know, a little notice being pushed round the table or whatever it is. One of the Chairs that I work with fairly regularly used to say something like, "I'm going to ask [Roger] to comment on that in a minute." It'd give you time to think – very, very useful. So there's all sorts of little, you know, tricks that can be brought in and used in order to get, hopefully, the maximum benefit from having a patient there.
It can be difficult to contribute effectively to a scientific meeting if it is not well chaired.
It can be difficult to contribute effectively to a scientific meeting if it is not well chaired.
Is that a strategy you would advise other patients or lay members to…?
Oh very definitely, very definitely.
Yeah.
I also believe that good Chairs will do that automatically, would actually turn to the patients in the room and say, you know, "Have any of you got a comment you'd like to make?" And I've been in the position now of chairing meetings where patients are present and that's something I particularly make a point of doing, but sadly not every Chair will do that. But, getting there beforehand and making him aware/her aware, very important.
People should seek out others’ views and be as representative as they can but without losing ‘their own specific patientness’.
People should seek out others’ views and be as representative as they can but without losing ‘their own specific patientness’.
The National Institute for Health Research has played an important role in promoting involvement. The UK is now a world leader in the field.
The National Institute for Health Research has played an important role in promoting involvement. The UK is now a world leader in the field.
Oh! The fact that it is so accepted now. I think the work that NIHR [National Institute for Health Research] has done has been, you know, really ground-breaking for the whole patient involvement community internationally. You know, I think there's little question that the UK leads the world, you know, and the work that eleven years ago, twelve years ago, we were doing in cancer is now, in disease suitable ways, replicated in diabetes and stroke and, you know, all the other themed areas, and indeed at the research network level on the ground. I think it's absolutely wonderful. And you know all power to the elbow of people like Dame Sally Davies [Chief Medical Officer] for making it happen.
Roger B is working to persuade pharmaceutical companies to have more patient involvement in their research.
Roger B is working to persuade pharmaceutical companies to have more patient involvement in their research.
Well, you think it's stopped changing? [Laughs] No it's still changing. Well, I think that the one big change I'd point to is that we are making inroads into the pharmaceutical industry. As a patient community, we are making inroads into pharma research. It's slow, there's a lot of protection there understandably, there are commercial issues about commercial confidence, for example and, you know, we have to learn as patients that we have to be able to respect those sorts of issues when they arise. But, I've done work in the last year with three pharmaceutical companies helping them think their way through how they do, bring patients in alongside the evolution of their research strategies and their actual research studies, and I know that there are other companies as well doing the same thing because within Europe we have a, probably a fairly closed little group of about ten or a dozen of us, all of whom are doing this in little ways with individual companies and we do occasionally meet up and pool our information.
Roger thinks that that the impact of PPI can only be measured by asking researchers.
Roger thinks that that the impact of PPI can only be measured by asking researchers.
Ha ha, yes, the ultimate question. We've struggled with that for twelve years and we still struggle with it [laughs]. I think the only way you're ever going to be able to do this is subjectively. You're going to have to ask investigators, particularly chief investigators, principal investigators, the ones who actually put studies together in detail, what their perception of the value is and hopefully they will do more than give the nominally appropriate answer.