Margaret Grayson is a retired radiographer who was diagnosed with breast cancer in 2004. Since her retirement in 2010 she has become involved in research as a patient advocate. In this blog she tells us why transparency in research is so important to her.
When I was
working as a radiographer I was aware of research. I knew it happened and I’d
see that certain patients were on trial doses as part of their treatment. But I
didn’t have the full vision of research until I became a patient myself.
When I was diagnosed with breast cancer in 2004 I really saw the benefit of research. I had to have 39 lymph nodes removed and a mastectomy, followed by six months of chemotherapy involving three different drugs, which had been developed through research trials. After this I had 25 fractions of radiotherapy followed by hormone treatment.
During my treatment I was amazed at how my doctors knew how to combine this drug with that drug – it was quite an education! After my treatment I really wanted to go back and thank patients who had gone on clinical trials to help develop the drugs that ultimately saved my life.
Everything is based on research. I feel it’s important for us as a population to have research explained to us in healthcare, and for research results and methodology to be transparent.
After I retired I was invited to be a patient involved in partnering with researchers through the Northern Ireland Cancer Trials Network. I now chair the Northern Ireland Cancer Research Consumer Forum and work with Cancer Research UK as a patient advisor on their Grand Challenge research projects. I’m also a member of the Public Health Agency HSC R&D Division’s PIER (Public Involvement Enhancing Research) Group.
The patient voice is very important in research. It helps keep everything central to the patient. I sit with people in research groups who are professors and who have years of knowledge and experience. They are experts in their field, but I am also an expert at living with a cancer diagnosis - and this leads to partnership working. I can check that the methodology that will be used in a study is sensitive to the patients being involved in the research. Feedback from myself and other patients like me helps to enhance the research and in turn helps aid recruitment and retention. There’s so much work that goes into planning and getting funding for research and that partnership with the patient voice can make all the difference to enhance the research and to add value.
I think transparency in research is so important. I see research as a partnership for all sides, with the researchers and the people who are going to take part in research trials.
My consultants during my treatment were very research active. I think it is important for consultants to have access to the latest research and be aware of new treatments. It is also important for patients to help shape research so that it benefits them and to be fully informed of the findings in a language they understand.
Researchers and patients working together in partnership helps ensure that not only are research methods acceptable and understandable but also that the results are transparent and accessible.
This transparency is important for both health professionals and people, to allow them to make informed decisions about treatment choices.
It is vital that the research community publish and make available - in understandable language - all research findings. Public access to research findings will be of benefit to the whole population.
I’d encourage all patients, relatives and carers to be part of this HRA consultation, so please make a point of coming to Belfast on 12 August.
Margaret Grayson