Tom

Age at interview: 68
Brief Outline: Tom became a consumer representative and started doing PPI about fifteen years ago. He works with numerous organisations, committees and groups in both health and medical research, and service delivery. His main research interest is in lung cancer, but he also contributes to research in other types of cancer.
Background: Tom lives with his wife. He is retired but formerly worked as an electrical engineers. Ethnic background: White Scottish.
More about me...
Tom’s interest in consumer involvement began after he was diagnosed with lung cancer. He took part in a clinical trial because doctors thought the other treatments available at the time would not have worked for his illness. Afterwards he was medically retired from his job and wanted to find something that he could spend his time doing. Tom had thought about his experience and wanted to translate it into research but didn’t know how. He was sent a letter from his consultant asking him whether he would like to meet with representatives and other patients from a lung cancer charity who wanted to start up a patient support group. He decided to join this local patient support group which started his career in consumer involvement.
His first serious involvement in cancer research was with the National Cancer Research Institute (NCRI) where he was asked to join the strategic planning group to produce a report on lung cancer research. Since he joined the NCRI, he feels he has built up his involvement in various aspects of the research process at local, national and international levels. As well as being asked to sit on a number of consumer groups he was invited to be a co-applicant on a research proposal. Tom believes in the importance of having the patient perspective built into the research project. His PPI role has also involved sitting on trial steering committees, presentations, commenting on proposals, radio and TV interviews, newspaper articles and reviewing patient information sheets and consent forms. Tom feels it is difficult for consumer members to provide a ‘representative’ perspective. He feels he brings his own views to the table and not those of other patients.
Over the years, Tom has seen significant changes to the level of consumer involvement in research. Researchers are now expected to involve consumers from the early stages of and throughout the research. He acknowledges that there may still instances where consumer involvement may be seen as tokenistic but feels that his contributions have been valued and has often found that researchers are extremely engaging and seek his opinion. Tom thinks that there are still challenges that need to be addressed in consumer involvement, which include increasing the involvement of minority ethnic groups and other hard to reach groups. He feels that if he “can help one patient have an extended life expectancy or a better quality of life for the time they've got” that would make him content. Tom would like to encourage other patients to become involved as he feels that consumer involvement is a positive and enjoyable experience.
His first serious involvement in cancer research was with the National Cancer Research Institute (NCRI) where he was asked to join the strategic planning group to produce a report on lung cancer research. Since he joined the NCRI, he feels he has built up his involvement in various aspects of the research process at local, national and international levels. As well as being asked to sit on a number of consumer groups he was invited to be a co-applicant on a research proposal. Tom believes in the importance of having the patient perspective built into the research project. His PPI role has also involved sitting on trial steering committees, presentations, commenting on proposals, radio and TV interviews, newspaper articles and reviewing patient information sheets and consent forms. Tom feels it is difficult for consumer members to provide a ‘representative’ perspective. He feels he brings his own views to the table and not those of other patients.
Over the years, Tom has seen significant changes to the level of consumer involvement in research. Researchers are now expected to involve consumers from the early stages of and throughout the research. He acknowledges that there may still instances where consumer involvement may be seen as tokenistic but feels that his contributions have been valued and has often found that researchers are extremely engaging and seek his opinion. Tom thinks that there are still challenges that need to be addressed in consumer involvement, which include increasing the involvement of minority ethnic groups and other hard to reach groups. He feels that if he “can help one patient have an extended life expectancy or a better quality of life for the time they've got” that would make him content. Tom would like to encourage other patients to become involved as he feels that consumer involvement is a positive and enjoyable experience.
Tom wanted to use his experience of lung cancer and being in a trial to help others. Working with a support group led to research involvement.
Tom wanted to use his experience of lung cancer and being in a trial to help others. Working with a support group led to research involvement.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Brilliant. And at that stage what were your expectations about what you'd be doing?
I had no idea really. I thought perhaps if the experience I had had with the cancer research trial, without being melodramatic about it, but if I hadn't had the opportunity of taking part in cancer research then I wouldn't be here today. So it seemed to be a positive thing to, to try to be involved in and to perhaps encourage patients as well to ask to be involved in clinical trials. And it just all sort of developed onwards you know.
These days Tom feels his views are actively asked for and it’s not a tick-box exercise, but ‘there’s still dinosaurs out there’.
These days Tom feels his views are actively asked for and it’s not a tick-box exercise, but ‘there’s still dinosaurs out there’.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well we have come across that in the past and it still does exist – not just in research but in other areas as, as well. "Do you have patient and public involvement?" "Oh yes, aye I spoke to so and so on the phone," it's ticked off whatever. So yes, there is – I have to say I've been probably fortunate where anything that I've been involved in , my view and my opinion, if I haven't offered it, it has been asked. There were occasions where you felt, way, way back when I first got involved, one or two situations where that could have been, you know, the tick box situation but I always managed to get my, my say in things. And I think it, I think it's now, from my perspective, you can't go to a meeting or anything like that and, and hide because more and more your opinion and your view is being asked for. And it gets to the stage where if, I mean I've been at meetings where I've more or less, for quite a lot of time, everything has been said and, "Oh that's fine oh I agree with that," and during the course of the meeting the Chair has said, "Tom you're very quiet, have you got nothing to say?" So you can't hide, you know which is good because then we're getting away from the, the tick box situation there. But it still does exist in areas – some of my colleagues have experienced it but I've been quite fortunate in that, you know, my opinion has been asked for if I am sitting quietly and drinking my tea.
I mean there's still, with all due respect, there's still dinosaurs out there who think, 'Oh no they shouldn't be involved, you know, we'll tell them what to do and what, what's best for them,' you know. But among the ones who have come out of the dark ages then yes it's very much accepted because a lot of them won't progress or won't proceed with their proposals or their studies or whatever without contacting consumers.
Tom never expected to meet so many interesting people. It gave him a new direction in life when cancer stopped him working.
Tom never expected to meet so many interesting people. It gave him a new direction in life when cancer stopped him working.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Did you ever think this was what you'd be doing in our life?
Oh absolutely not, it’s something I'd never ever dreamed of, of anything like this so it was a total life change, you know, after , after having lung cancer, you know, a different direction totally. You know, grateful that I was still alive in the first instance and totally grateful as well that I was still able to get involved in something like cancer research. Yeah it’s been good. I've enjoyed it.
Tom feels he still has lots to offer even though his lung cancer was 20 years ago. In some situations he may be able to offer more.
Tom feels he still has lots to offer even though his lung cancer was 20 years ago. In some situations he may be able to offer more.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Over the years Tom has become more involved. His involvement takes him all over the world.
Over the years Tom has become more involved. His involvement takes him all over the world.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Tom isn’t there to represent anyone. There are lots of terms but consumer or lay person are as good (or bad) as any.
Tom isn’t there to represent anyone. There are lots of terms but consumer or lay person are as good (or bad) as any.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Don’t be afraid to speak up; there are no silly questions.
Don’t be afraid to speak up; there are no silly questions.
SHOW TEXT VERSION
PRINT TRANSCRIPT