Maggie

Age at interview: 71

Brief Outline: Maggie has been a patient advocate in research for about 12 years. She got involved in health and medical research after she was diagnosed with breast cancer.

Background: Maggie is retired, but worked as a health visitor for most of her career. Her daughter died of Reyes Syndrome when she was two years old. Ethnic background: White English.

More about me...

After she was diagnosed with breast cancer, Maggie joined a network of patient groups campaigning for better treatment for breast cancer patients, which later merged with another large national breast cancer charity. She attended a conference organised by the charity, where she was invited by a researcher to become a lay member on a steering group for a large breast cancer treatment trial. She found the research very interesting and saw how involving patients helped to overcome some of the barriers the trial faced. Because of this experience she joined a local research group and travelled to the USA to undertake a Project Lead Training course. This involved learning about science and research methodology and, whilst it didn’t make her a “scientist in a week”, it gave her a better understanding of research. She felt strongly that this type of training should take place in the UK, so, along with the other research group members, set up a group to offer training for patients throughout the UK. The aim of the group was to provide education, mentoring and support for people who had been treated for cancer and were interested in adding the patient perspective to research. 

As a patient advocate, Maggie offers a patient perspective to researchers who are setting up a new trial, and advises organisations that provide patient and public involvement. Working on trials involves reading and commenting on documents about the research, including what the research is aiming to do and how this is communicated to participants. She also attends meetings to discuss the research with researchers, clinicians and other patient advocates. She also encourages researchers to think about what difference their projects will make for patients and thinks there should be more research done on the effects of cancer treatment on things like patients’ quality of life and relationships. 

Maggie has found that researchers have been very positive about the difference involving patients makes to their research. She said the biggest indication of how valuable they see it is the large number of experienced and junior researchers who contact her organisation to ask for a patient perspective. She thinks one of the strengths of involving patients is that they can ask the “elephant in the room questions” because they aren’t there as employees, but as interested people. She said that patient advocates don’t need to be representative of all patients; they should draw on their own experience and training, and discuss things with other patients. She thinks that new patients should be encouraged to get involved in research and mentored to help them do so, but that it would be a shame to waste the expertise and skills of people who have been doing it for a long time. Maggie described her experience of being a patient advocate as seductive and exciting. She feels like she’s making a difference, which leads to research becoming more valuable and more beneficial to patients.

Maggie’s breast cancer group comments on leaflets for individual trials but also provides input to many local and national studies and organisations.

We do the wide, it's a really, really wide range. We have, researchers send us new trials when they're at the planning stage – they send us protocols, they send us patient information sheets, they send us consent forms. They can be circulated around our group and the response is collated and sent back. We also attend meetings and these will be [coughs] trial management meetings, group meetings; they will be trial working groups; they will be meetings of national groups, local groups, tumour site groups – so they may be a breast specific meeting. For instance, there's about five of us attend, as full members, of the breast, the UK Breast Intergroup, which meets twice a year. And they are very, very supportive of us and they always include us in the discussion, and actively seek our input at different times in the discussions. 

We're stakeholders with NICE. Now there's a lot of work there and we can't do it all but we can select certain things that we can send comments in about. We're, we have members who sit on different clinical study groups. We have people who are involved with things like London Cancer UCL Partners. We have members on the UK Confederation of Cancer Biobanks. We have two members who set up the Brains Trust, which is a brilliant organisation charity for people with brain tumours. We have members in various organisations so, and they all bring to the, you know, the melting pot. And we learn from each other as well as from professionals. And if we haven't got the, you know, if one of us gets a request and we feel we're not skilled enough in that field, we can send it round the group and found somebody who is better able to meet the need or we can learn more. And I think that is an essential part of the job is actually recognising your limitations and not giving people unrealistic expectations of what they can achieve, but encouraging them to develop and to be brave. And most people now, most researchers, most organisations are very encouraging and very welcoming of lay input, so it is, I think it's a lot easier but it's also getting more and more of a responsibility to do it properly.

Maggie went on a course in the US on cancer research and is now running a similar course in the UK. Learning from scientists has been amazing.

I then was able to go to the States to undertake what's called Project Lead Training, which the course was actually free but I had to find funding for travel and a hotel. And we had, I belonged to a local research group that I joined around the same time. It was a new group that had been set up, I think there was Macmillan funding for the original three centres that set it up where there was a mix of, our group was a mix of professionals and people who'd been treated for cancer, not just breast but generic cancer. And the person who set our group up was [name], the research manager, she was able to find me funding for my travel costs to do that course. And it was the most amazing course, which, it goes into the science, the cell biology, research methodology. And you're not a scientist in a week, but it does give you a much, much better idea of understanding the gist of what the scientists are trying to achieve. And it also was extremely exciting when you understand more about how cells work and what switches this on and switches that off. And so I did that training and then was able to enable other people to go off and do this training. But we decided that we needed to be able to do a similar training here in the UK and we shouldn't have to go to the States. We've got just as good, if not better, scientists here, and we should be able to do this here. And we also wanted greater freedom of dialogue with the scientists to be able to put a direct patient perspective into the research, and to be available to them for comment on protocols and new potential trials and that sort of thing. 

So we set up our new group which is Independent Cancer Patient Voice, and the aim was to provide education, mentoring and support for people who had been treated for cancer and want to get more involved in the research, adding a patient perspective to that research. And we've been running workshops over one and two days. But we go to the academic centres around the UK, so that way we get a better geographic mix, but we also enable, it enables us to get a venue without charge, but we also get the teaching and it's, the scientists at these centres have been extremely enthusiastic and very supportive.

A good chair (lay or professional) will encourage everyone to contribute but without pushing them.

Yes I think researchers, well I think the message has got to most people. I think if you want lay input, ask for it. And sometimes if you don't get an instant response, you know, send another request because sometimes it's just that people are busy or, you know, it's on the to do list and it hasn't risen – it's not because there's no interest. And value those people, make them feel welcome. You know, some professionals are extremely good at chairing meetings where lay people are involved and some are not, some are appalling. And some of the people that you would feel should be really good, are not good. Good chairing of whether it's a meeting or whether it's a teleconference, you need to actually acknowledge everybody who's taking part and to make sure everybody does take part. That's not to push people when they're not happy to be pushed but just introducing, you know, and just asking for, you know, "Is this something you'd like to comment on?" Or, "Well actually this is something that we need a lay view, what do you think about this?" And if they don't come back right away then say, "Well could you think about that and then come back to us?" So don't put people on the spot. But equally the lay people that are getting involved in these things have to be prepared to be challenged. So they have to be prepared to be asked for their – that's what they're there for but don't be frightened to say, "I don't know." At the end of the day we're only patients so you can play that card. But we need to be, we need to earn our place at the table to be respected and I think we've done that. 

Maggie’s initial motivation was personal fascination with the research, but now she’s inspired by knowing it can help others.

And when you first got involved what did you sort of think lay ahead of you?

Hadn't a clue. I just knew that it wasn't so much getting involved to add a patient perspective initially. And I suppose when I first got involved with the coalition and then with Breakthrough, it was more to do with improving services and treatments for patients, and it was a sort of progression from that into the actual research. And when I got involved in the research it was more to do with learning about it and the fascination rather than adding a patient perspective, that grew from it. And I think it's been very inspiring, no, not inspiring, very motivational, realising how much it is appreciated by the researchers and how you can make a difference and it's an important difference and it makes the research much more valuable. But it also means that the research is actually for patient benefit and that the patients who take part in the research are properly looked after. 

Maggie’s group comment on all types of cancer. They feel it’s important for someone’s experience to be recent but not too recent – but after a while you get ‘too used to doing it’.

It cuts both ways. We feel, one of the criteria for our membership is that people should be at least a year after their treatment because we feel you need some time to actually get your head round what's happened to you and to be more detached from it. You can use your experience – it's very important in what you do, but you have to be more objective about it, you have to be able to see outside the box and, you know. We are a generic cancer group, not a breast specific, so we have to be able to comment on all cancer research, not just a, the type that has affected you. I think there is a danger that people, not only do people get too , too used to doing it; I don't think it's actually healthy for people to be over, you know, too much time spent on it, which , I mean you get a bit boring when you're, you know, socialising and you talk about this all the time. It's also, it's good to have other, to maintain other non-cancer parts of your life. But it's also, you can become a professional patient and I don't think that is necessary – that is more of a problem with, to representativeness, I think. 

Maggie thinks that lay people can make a difference by asking ‘the elephant in the room question’.

I think sometimes one of the biggest is that we can ask the elephant in the room question. We can say, "Well why not? Why can't you do this? Well why can't you do it that way?" We're not employed, we don't have to worry about the hierarchy in our jobs. And we don't have to, we can challenge from a purely interested point of view, not worrying about, you know, the bosses or the NHS or anything really. We do have to be aware and I think patients are very aware of cost of treatment and cost of things. And I think we're not saying that you should have any drug at any price, or any treatment at any price – I think we do have to have a system, but I think we should be involved in those decisions and I think we can actually make a very valuable contribution in that sense. I think we can always, the value is maintaining the patient perspective throughout, and finding ways that overcome unnecessary barriers, that we can find ways of making something more acceptable to patients, explaining it better to patients, and things like insisting on feedback of results in some way. 

Maggie’s group told the research institute director they are not ‘representatives’. They don’t like the word ‘consumer’, but prefer ‘patient advocate’.

I said, "Well we didn't see ourselves as representative," and he said, "Well say so, you know, don't call yourselves representative, you need to say so." So we don't. We had to come up with a better – we didn't like consumer, we didn't like user, and we feel that patient advocate is the best because, as a group, we can't be representative. We do try to keep up to date, we do try to have involvement in our local groups as well so that we do try to take a more broad view into the work. But to do what we are doing, you cannot be representative – you have to have developed some expertise, you have to develop some further knowledge, you have to give time and commitment and not, it's not everybody's cup of tea, not everybody wants to do it. And so you can't be representative, but we can advocate for other people. And to do that is a responsibility and the responsibility includes being educated to do it properly.