The Value of Patient and Public Involvement to the Researcher
Reflections on my role as a Patient Advocate in Cancer Research
Firstly, a little about me:
A lifetime working in healthcare, mainly in surgical clinical practices, and have always had a great curiosity in health topics. Then, out of the blue, diagnosed with a fairly aggressive breast cancer, successfully treated and remission has been longstanding. What I learned from that episode was that some cancer patients (particularly breast at that time) were very active in patient advocacy, including support and research opportunities. This interested me and made me think that by getting involved in some way I would personally feel that not only could I have more control over my own health, but maybe learn and then speak on behalf of others. And my curiosity knew no bounds!
It takes time to become a well-informed patient advocate as it’s not only lived experience but can be years of becoming more and more aware of where we can make a difference, and gaining the skills to do this successfully. Networking within the cancer community is essential to learning. I have also attended science courses for advocates both here and in the USA.
Over time I joined various clinical committees and groups as a patient representative, which has given me a good grounding around the workings of cancer services in the NHS. Some-time later I was asked by a colleague from the cancer patients in research charity I had become involved with as a member, if I would take on the role of patient representative, (co-applicant) on what was set to become a major international breast cancer study. This gave me my first glimpse into the workings of study teams. I have since gone on to complete several training workshops with the patients in research charity, Independent Cancer Patients’ Voice www.independentcancerpatientsvoice.org.uk and the NIHR East Midlands Research Design Service, managed out of University of Leicester.
This year I attended for the second time, the American Association of Cancer Research (AACR) annual conference, this year held in New Orleans. This was alongside approximately twenty-five other advocates taking part in a science survivor programme alongside the main conference. The work we undertook included following areas of relevance like Big Data and Cancer Disparities and presenting our findings at the end of the five day conference. We also displayed our own posters in the exhibition hall at a pre-appointed time in a dedicated area which proved very empowering. It meant we each learnt about each other’s work we are associated with as a research advocate. The advocates were joined at crucial points including exhibiting in the Exhibition Hall, by young laboratory (bench top) researchers. The feedback we had from these young people was fabulous as they had not associated with patients in any way up to that time and had found it most enlightening.
In May I attended the Association of Breast Surgery’s annual conference in Liverpool and showcased some of the studies that members of the charity Independent Cancer Patients’ Voice are currently involved in. I and a colleague had a dedicated ICPV stand in the Exhibition Hall.
Now, this brings me to mention my attendance at the British Association of Cancer Research (BACR) Annual Conference in late June in Nottingham. I was very happy indeed on application, to be offered a bursary for this 3 day conference. It was a great opportunity having so recently attended similar in the US to see how it all works here. It was a well thought out and well organised meeting covering a diverse area of research, including focussing on new technologies.
A big difference I noted between the AACR conference and the BACR was the lack of patient representation in any form, I myself being the only patient research advocate at the BACR conference.
There is a need to incorporate patients and advocates throughout the research continuum. - Incorporate patient driven research questions earlier in the process, specifically at the level of basic bench top research. Patients’ perspective and insight can give investigators a new lens to look at a problem. Patient participation has grown but primarily in the clinical research setting. The pace is slower at engaging patients at earlier stages in the research continuum, especially in the pre-clinical and basic research level.
Advocates possess the unique ability to focus on the impact and significance for patients (and focussing on the bigger picture) which includes the possibility of less invasive testing, more accurate assessment of disease burden. Patients and the public can look at research from a practical point of view and make positive recommendations, suggesting for instance more meaningful and reliable outcome measures, effective timing, improved recruitment procedures. Patients are the most valuable resource that a researcher has for dissemination of study results to the communities that will be impacted by the research. Despite positive developments, in the relationship between patient advocates and researchers in recent years, there is still room for education on both sides.
From my own and ICPV colleagues experiences this is indeed an area where involvement is clearly seen to be working, from clinical trial applications, to clinical trial management groups, we are heavily involved. We receive feedback from the researchers regularly to say our words have made a difference to their applications and in some cases have almost been re-written to accommodate. The patient information summary is the main area we comment on and our opinions are highly respected. Recruiting can be difficult to some trials and this is particularly where we offer our expertise.
So, clinical research is an area that seems to be going from strength to strength with regards to patient involvement, and ICPV are quite unique in that they can act quickly as a group through a highly interactive online email forum, or individually, taking on clinical trial work which could mean a commitment of several years. But as mentioned earlier, the progress of patient and public involvement in basic bench top research is quite slow and there is a definite need to improve this. I would strongly encourage BACR to explore avenues to bring patient/survivor advocates into the area of lab based research. As seen this year at the AACR conference in the States, by introducing young lab based researchers to patient advocates we could see how extraordinarily pleased they were to actually be in contact with patients!
Comments/reflections gathered from research advocate colleagues:
These are comments from fellow Independent Cancer Patients’ Voice members on their role and what brought them to the role.
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