Maggie Wilcox speaks with ecancertv at the 2016 BACR and ECMC Joint Meeting about Independent Cancer Patients' Voice, a patient advocacy group who aim to educate and improve the outcomes of patients through involvement in research and special events.
She outlines the engagement sessions offered by ICPV, and the benefits of open dialogue between pathologists, patients and healthcare providers.
She does note the barriers to access still facing patients, such as relying on academic members to source the editorials written with and about the group.
BACR & ECMC: Therapeutic interventions for cancer prevention
Bring patient voices into research
Maggie Wilcox - Independent Cancer Patients' Voice, UK
What is Independent Cancer Patients’ Voice?
We’re independent of everybody, patient led, totally all patients, all carers, but we work with all the major charities and the NHS and researchers and academic units. So we’re happy to work with anybody but we try and present a direct patient perspective that is not filtered by needs to meet strategic aims or objectives.
We aim to provide education, mentoring, support for people who have been treated for cancer and we think there should be at least a year after treatment to be more objective. So we then try and provide education so that we can be more realistic, more effective when we add the patient perspective to a research project. So we go all round the academic units in the UK and our fellow collaborators in the research world actually host us and they’re enthusiastic about this. They teach us, so we get the venue and the teaching usually for free but we still have to find the funding for accommodation and the logistic costs, if you like. But we started with one day and then we went to two day, so we still do one and two day courses but we also have a five day science for advocates course which we’ve run for the last three years at Barts and The London Medical School with Professor Louise Jones and John Marshall. We’re doing it at Warwick University this September and this is based on the American project lead training which quite a few of us have already done. But we think it’s an add-on to that because we have a practical element to it. So we have lectures in the morning and then we’re hands on lab experience in the afternoon. So we actually go in and we learn how to use a pipette and then we go on to doing our own buccal smears and DNA. Then we do tissue preparation and slide staining etc. Then we actually see a breast straight from theatre and watch it being dissected and prepared – prepared, painted and dissected and the bits taken for… sorry, samples taken for tissue banking as well as for diagnostics. It’s amazing how much more we appreciate what the pathologists and the role of the pathologists and how important they are for our treatment because if that’s not right the rest of it can’t be. But pathologists don’t usually meet patients and it’s really good for them because it makes their work so much more real.
But we also do some what I call the soft and fluffy research. So Lesley Fallowfield who is the Professor down at Brighton, she’s actually hosted us for two separate psycho-oncology workshops where we actually have gone down and looked at quality of life issues and patient reported outcome measures and putting the patient, what really matters to patients. Our Chair is actually an immunologist by background and she’s a metastatic breast cancer patient. Through her work there’s now a subgroup of the Breast Clinical Study Group which is actually looking at side effects of the treatment and dealing with the symptoms that really bother patients which aren’t always dealt with.
So we’re a generic cancer group, we started in breast because that was what we were used to but we very quickly realised that in this country we need a generic group and we’re particularly keen on the link with the rarer cancers. So we have a good link-up with Cancer 52, the Rare Cancer Foundation and Cancer of Unknown Primary. So we work with other groups; one of our members started off the Brainstrust charity which is specifically brain and brain tissue banking. We’ve had two editorials printed in Clinical Oncology but we had to actually get our researcher friends to email the content to us because we weren’t able to access it. I think we need to look at that; we need to look at working with pharma because pharma have got to appreciate the difference between Jo Soap from off the street, a member of the public, a patient who is undergoing treatment, a patient who is participating in a clinical trial and people like us who have gone through that but now are part of the team and working in research and not exclude us from meetings because we’re a patient, we’re a partner in the research.
Can you tell us more about the stakeholders?
We’re stakeholders with people like NICE, so we have a lot of papers from NICE but we actually can’t contribute to all of them, it’s not appropriate. So those are to specifically… some of our members may be particularly interested or we’ve got a bit of credible information to add then we go to… We also are on the stakeholder panel at the Human Tissue Authority, the Health Research Authority, and Janet Wisely who runs the Health Research Authority has been brilliant right from the start at helping us to get established and to cooperate with us and we’ve been able to input to them as well. It’s that cross-fertilisation between our organisation and these organisations that’s really valuable.
We also are stakeholders with the All Party Parliamentary Group on cancer and we also go to meetings of the Patient Forum at the ABPI. Most of the big charities and the site specific charities we also work with and we would go out to them for a wider perspective if we’re doing something and looking at a particular issue and we want not just our patients, our members views, but a much wider panel, then we go to them. But we also want to get involved with the public and we haven’t done as well on that as we would like to.
The other group that I’m particularly keen on liaising with are the next generation of consultants. So there are people like the group that Dion Morton started in Birmingham, which is the West Midlands Collaborative. It’s a brilliant bunch of next generation of surgeons who meet in their own time and they look at research and possible potential for research. We can input to that not all the time but some of the time. There’s also the Mammary Fold which are all breast trainees and the pathology trainees at the Royal College. So there’s lots of scope for us getting involved with these exciting young trainees because their enthusiasm is fantastic and we want to boost that as much as we can and also get involved with them at this level so we can help them more when they’re established.
What are the issues with access to papers?
I was asked to contribute a few lines to Professor Val Speirs up in Leeds. She was doing a chapter for a new book, an international book on biobanking, and she asked if I’d do a few lines from a lay perspective. That turned into a whole chapter, a lay chapter, in this book. So amongst us all we had different aspects of it we contributed, so it wasn’t all me it was different people but together we made a really good chapter. But when that came out we got one copy in the post that was quite difficult to access. We did get it in the end but we have to go round corners to get to these things. If we’re associated with a university I think we can link in there but we haven’t got any headquarters, we haven’t got any money, we haven’t got any paid staff, we haven’t got a Chief Exec, we haven’t got any secretarial input so it’s quite difficult for us to track things down and to get ourselves better organised. But if there was some system where… there is an open access to… some organisations do have that, but these particular things that we’ve contributed to we’ve had a real problem in actually accessing it ourselves. So the last one we did which was a researcher’s perspective on patient involvement in their research and how important it had been and there were three different groups of people did that with us, and one of them was Matt Krebs up at The Christie and I happened to be up at the Christie and mentioned it so he then went and emailed me there and then. We’d just heard that it was out but he then emailed me the article which we were then able to circulate to our members.
We have a closed Google group that’s just open to our members so if a researcher wants a paper looking at and protocol looked at, information and patient consent, it can be circulated round the group and then the comments collated and fed back to the researcher. So we’ve got a lot of scope for interaction but we do have problems in actually accessing articles that we’ve actually written.
Have there been any specific areas that have been of interest to you here at the BACR?
It’s absolutely brilliant and the enthusiasm here is incredible. I think it’s one of the best conferences I’ve been to for the content. A lot of it has been over my head, I don’t pretend to understand it all. We do a five day science for advocates course, we’re not a scientist in a week. But it does give us the idea and the gist of what the scientists are trying to do and I think it’s brilliant.