My children, four girls and a boy, are now aged between 23 and 34 so mostly living away from Felixstowe where they did most of their growing up and where I still live. I am a support worker for adults who don’t have mental capacity to decide how to manage their finances and property.
I was already involved with research, mainly concerning cancer, when the Ambassador information came out through a newsletter I was reading.
I walked into the wonderful world of health research when I responded to an advert in a newspaper from the National Cancer Research Institute. My family's experience of ill health is maybe unusual as it includes experience of different diseases as well as sadly early death. I had wanted to become involved in health research more broadly than in cancer so the Patient Research Ambassador Initiative was exactly where my thinking was going at the time!
I want to use my voice to speak up for my family so that their experience of ill-health is managed better and so that in future other people who will live with similar experiences will live longer and better lives. That can only happen by better understanding of disease and health care needs through health research.
I have had quite a lot of health research experience in the 8 or so years that have passed since that newspaper advert. I am a member of a study management team bringing together the NHS cancer and heart data sources to better understand the interaction between cancer and heart disease. I sit on my local hospital and university research governance and ethics groups and recently became a public member of a National Institute for Health Research funding panel. Most recently I was involved in a research awareness event in Ipswich, where I had the opportunity to speak to patients about their experience of taking part in cancer studies and the importance of patients to consider information about all available choices before making a decision to participate in research, in other words being active in the decision-making process as opposed to being passive. However, this is hugely dependent on whether the information patients receive is appropriate and written in lay language. Another role I have undertaken recently is joining a patient panel focusing on the use of our personal health information, or data being shared for the purposes of health research. I believe that everyone needs to be part of this discussion about consent to share our personal health data, and to understand that more data sharing means better health and better treatments for all of us.
I had no idea that I was becoming part of a truly wonderful world that is health research. It is filled with such lovely, good people who smile and welcome, who have such integrity and commitment to the public good – the best of what it is to be human. Become involved and, like as happened to me, discover such a bright place!