Why I chose to become a public contributor
I joined the HDR Public Advisory Board (PAB) in January 2022 wanting to make a difference in the implementation of PPIE in health data research. I joined PAB after various experiences in the healthcare and health data space. Having been born with congenital cataracts, I have been exposed to healthcare services from a young age. As a patient with a rare disease, I know exactly what it feels like to search for information for your own condition, only to be bombarded by catchy and misleading article titles and technical jargon. I have also worked in a patient-facing NHS role for several years. It introduced me to the importance of patient data safety, clear communication, and absolute transparency required with patients and members of the public to uphold their trust.
These previous experiences heavily influenced my decision to move into the world of scientific research. I am currently working towards my PhD in Genetic Epidemiology, focusing my research on better understanding risk factors, and possible prevention and treatment options, for cataracts. My own experiences from using public health data in my own research has further opened my eyes to the need for meaningful PPIE, to help provide direction to health data research.
When given the opportunity to speak about the incredible work achieved by PAB, I jumped at the opportunity to share this through HDR UK Stories.
Why getting involved matters
Health data research is effective in providing solutions to pressing health-related issues faced by patients and the public. Patient and public data transforms researcher’s understanding of diseases and their associated impact in finding effective prevention and treatment of diseases. Overall, strides made in health data research are life-changing for patients, as highlighted by the rapid researcher response to COVID-19. The urgent research surrounding COVID-19 showcased the true potential of health data research and the impacts that can be achieved through its optimum and safe use.
I have enjoyed my involvement in several areas, one being the research process, from patient data to research outputs, and having a say in all its constituent parts. From speaking to representatives of funding bodies, data custodians, and researchers directly, there is an important and much-needed space for PPIE in all aspects of the research process and it is somewhere I look forward to making an impact.
It is also incredibly rewarding to be a part of the solution in tackling challenges for health data research. Since joining the HDR UK PAB, I’ve added my voice to a vibrant collective of diverse individuals, all driven to tackle challenges and create meaningful change to improve people’s lives.
How my voice is making a difference
Since joining HDR UK I have been fortunate enough to be involved in tangible achievements to improve health data research. I and other PAB members were invited to provide comments on a project seeking to streamline the data access process between data custodians and researchers, via a Trusted Research Environment (TRE) Legal Tool Kit, initially looking at a standard Data Access Agreement (DAA) template. During the process, I provided comments and answers to questions on a preliminary draft of principles to underpin the DAA template which was later detailed in a journal article for publication.
Throughout this process, I felt that my feedback was taken on board. I co-authored the journal article, with my comments being quoted, and I had a material impact on the template itself. I also felt supported and valued for both the positive comments I provided and the critiques on how to improve. The DAA template was a great example of how PPIE can be embedded and used to make meaningful change to health data projects. The DAA template also displayed the value of involving PPIE from a project’s inception and the incredible impact that can be achieved when facilitated correctly.
There are still improvements to be made
Unfortunately, there are still significant issues within research that need to be tackled. For example, the diversity of the data being used. While outputs provided by health data research can be material, I have seen through my own experience that using biased data can lead to misleading and inaccurate findings. A large portion of research currently uses singular-ancestry data (e.g., European data). While this data is informative and has led to meaningful research outputs, findings using singular-ancestry data do not always apply to a significant proportion of the public. Therefore, generalising results built on singular-ancestry data for all patients may be inaccurate.
Furthermore, the importance of information accessibility is sometimes overlooked. Health data research is a complicated space, even for researchers. However, when information is provided in an accessible way, patients and members of the public can help transform and maximise the benefits of research by empowering their understanding.
What to expect if you get involved
Patients and members of the public can add incredible value to the health data research community. Health data research starts with patient and public data and ends with significant impacts for patients, so it only makes sense to have meaningful PPIE throughout the process.
There is huge potential for patients and members of the public to have a greater voice in health data, and plenty of researchers and data custodians ready to utilise their value, that can be brought to the table through meaningful PPIE. My biggest advice for patients and the public is to be ready to have your say, be a critical friend, provide challenge, and never underestimate the value you carry in the complicated and evolving space of health data research. I believe every member of the public should have their say and help direct where research is being led, because ultimately the public are the most impacted by research outcomes!
The future of PPIE
The outcomes of health data research are life-changing. The scientific strides made, as of yet, have illustrated the improvements health data research have made to the health outcomes of patients. While this has been incredible so far, I would want to see the outcomes of research reach more people across the world, from different backgrounds, through diversifying the datasets provided to researchers.
Furthermore, I think collaboration and co-development is key. PPIE should be in every aspect of the health data research process. Through effective collaboration and co-development at every stage of the research process, we can provide clear direction and solve issues as and when they are occurring to ensure the best possible results for patient impact.
Ed: Better to light a candle than curse the darkness
4 September 2023
In Northern Ireland, I had often felt like a lone voice calling for wider access to patient data by accredited researchers. Now, I'm a member of a bigger UK organisation which would have a major...
Clara: Breaking the silence for neurodiverse voices
4 September 2023
By sharing our unique experiences, we can help researchers and patients learn from each other. Open the door and see how it is. Give one step and you can always go back out.