A patient's perspective of using data
Margaret Grayson is passionate about data. She is a keen advocate of patients sharing their data so it can be used to improve patient care, diagnosis, treatment and outcomes. Following a diagnosis of breast cancer many years ago, she’s keen for others to understand the beneficial impact the sharing of health data can have.
Margaret's enthusiasm has led her to become a member of use MY data. This is a movement of patients, carers and relatives, whose vision is for every patient to willingly give their data to help others. People would do this safe in the knowledge that all information is stored securely, maintaining confidentiality and anonymity.
By highlighting the many benefits of appropriate use of healthcare data, use MY data aims to educate and harness the patient voice to understand aspirations as well as concerns around the use of data in healthcare delivery.
“Data, it’s a small word with massive importance. I share data on a personal level. You see I’m a statistic, but behind my NHS number I’m Margaret Grayson. A person with lived experience, a multitude of interactions with the health service. Information which is valuable and can be of use to others.
"Talking to clinicians and researchers I want to acknowledge our roles within any health and care audit, in expert analysis, monitoring patterns of patient care which drives improvement in care. One which asks the right research questions which in turn affects outcomes.
"For me, researchers asking the right questions of the data available has meant finding the right surgery technique for my mastectomy, the right combination of drugs for my chemotherapy, the dose fractions and technique in radiotherapy, the right aromatase inhibitor that I took this morning and some answers on the long term effects of living with cancer. I believe that as a patient I have a responsibility to the rest of society in permitting my data to be used, but I also have the right to ask clinicians and researchers, or perhaps rather demand, that my data is used, remove the barriers, use for purposes of audit, comparison, research, ask questions and find answers for me and all the other patients like me. I want that data to be used in ethical research with due governance and transparency. I want the NHS to be careful with ‘Data Margaret’. What I don’t want is ‘Data Margaret’ to be locked in a box, padlocked, probably triple padlocked, as access to ‘Data Margaret’ is becoming more and more difficult. I know the legislators among you will say they’re protecting ‘Real Margaret’, but can I ask you, are you protecting Margaret or yourself?
"I know ‘Data Margaret’ is safe, that my personal details are removed. Anonymous ‘Data Margaret’ is more interesting to researchers and those at the forefront of developing new treatments and medicines. My health details, my illness, my treatment, how I've responded, recovered are recorded and used to help others. It’s something I believe in and am really passionate about. If using my data in that way can help others going through what I have gone through, what better reward.
"As I was on my cancer treatment journey I made six really good friends. We were all in the same boat, we were close. Within five years of knowing one another I’d been to their funerals. That’s where my passion for the health service using my data comes from. I want it to be used so that other friendships which arise from similar situations can last longer than five years."