I’m involved as a public and patient representative in all types of research. From basic science, to research using wearables data, to being on the approvals and oversight board for the BHF Data Science Centre CVD COVID programme, which is led by HDR UK.
I live with a rare autoimmune rheumatic disease, and it’s led to me developing lots of long-term conditions that have affected various organs, such as my heart. It took me four years to get diagnosed, and what I discovered during this ‘diagnosis Odessey’ was that the research that was out there didn’t always reflect my priorities, and didn’t always represent what was important to me as someone living with a disease.
It made sense to me that if you involved patients and public in research, it would be much better at really meeting their needs. That’s what led me to getting involved in research myself.
Quality, not just quantity: What the pandemic taught us about collecting meaningful data
One of the most important things I want to help address by being involved in research is to make sure data is truly collected from the patient’s point of view.
There’s been an increasing focus on involving the public in how data is collected and shared safely and securely in recent years, which is great to see, but I’d love to see the public more actively involved in what that data is used to measure. And, importantly, how the outputs from data research can reflect what is meaningful to them.
COVID-19 has shone a light on this. Data was hugely important to identify treatments and vaccines that helped save millions of lives, but there’s so much more to understand than the life-or-death impacts of the pandemic. Outcomes for people who have experienced long-COVID for example, haven’t always been well recorded, partly because this is more complex than just measuring ‘deaths’ or ‘hospitalisations’.
We could do more with data to understand what’s meaningful to people in terms of quality of life – not just maximising years of life, but years of healthy life.
Addressing inequality needs honest conversation
Although my diagnosis was challenging, I know in a way I was fortunate – I’m in the privileged position of having great family support and access to research and information that I know not everyone does.
Making sure data-driven progress in health and society is equal and accessible to all, and that no groups are left behind, is a key theme of HDR UK’s Scientific Conference this year. For me, this is really important.
The pandemic revealed huge inequalities across different groups, but we know we only scratched the surface – there’s a long way to go in terms of accurately collecting data on ethnicity, socioeconomic status and more, and the intersectionality between these inequalities.
At the conference, I’m looking forward to having an honest conversation about both the strengths, and current limitations of data, and how we can build on our existing methods to really understand what’s important to people’s lives.
Having been involved as a public contributor in several projects with HDR UK, I know there is a willingness to have these conversations about how we can make health data research more inclusive and beneficial to patients. I would encourage anyone with an interest in health data or improving patient care to come along and give your point of view and help shape the future of health data research.
You can register to join Lynn at HDR UK’s annual Scientific Conference: Data for Global Health and Society now. Members of the public are encouraged to attend and share your views to help us make health data research better for all. Bursaries are available to support travel and/or accommodation costs to attend in-person, and conference talks can also be joined remotely.
Health Data Research UK signs pledge to improve public involvement in research
15 November 2022
HDR UK joins the Health Research Authority and a host of other organisations to sign the Shared Commitment to Public Involvement in Health and Social Care Research
Being part of the Public Advisory Board has been such a unique experience
28 October 2022
Many of you are probably reading this because you are interested in joining the Public Advisory Board. To which I say, express your interest today!