Public contributors and members of the BHF Data Science Centre recently had the privilege of attending Orkney International Science Festival. Here we share key highlights from an important keynote talk that captures the essence of how health data can save lives.
Anna Woolman (Public Engagement and Communications Manager at Health Data Research UK) brought together Professor Cathie Sudlow and public contributor Chris Monk to discuss the importance of health data for improving patients’ lives and key considerations for ensuring public trust in the use of data.
With a growing reliance on health data in research in clinical settings and the enrichment of information through data linkage (the linking of different types of health data provides a more complete picture of a patient’s health and medical care), public involvement is crucial, not only to improve research outcomes, but also to ensure the public are active participants in the conversation of how health data is used.
Health data can be life saving
Chris Monk, who has worked closely as a patient advocate for the British Heart Foundation and recently supported the BHF Data Science Centre’s smartphones and wearables work, shared how his smartwatch detected abnormalities in his heart rate and how he was subsequently diagnosed with atrial fibrillation, an often difficult to diagnose a condition that can have serious short- and long-term health consequences. Smart devices are producing valuable, lifesaving data with opportunities for early detection. Cathie also highlighted how useful this information can be for clinicians: often only seeing patients every 6 months, clinicians can use this data to get a more accurate picture of their patient’s condition in the interim.
I know first-hand the impact that health data can have for an individual. Because of my smart devices, I was able to identify an issue and have it quickly and accurately diagnosed. I continue to use my smart devices to monitor my heart condition, and the reassurance it brings allows me to enjoy exercise to the full without having to second-guess anything. Beyond the individual, this data has the power to transform healthcare for entire populations but, to do that, we need to bring the public on that journey. Hopefully, this event helped with that process. – Public contributor, Chris Monk
This discussion clearly highlighted the importance of health data and, as more patients collect and have access to their own data, they can be empowered to participate in health-related discussions and decisions about their care. However, data needs to be complete, accurate and used for public and patient benefit.
Ensuring patient and public trust
Anna highlighted how privacy can often be a concern for patients when it comes to their personal health data and emphasised the need to maintain public trust. Chris reflected on the importance of effective communication in order to achieve this; being explicit with the public about what data is being collected and why, and making sure the tangible benefits of using health data are clearly demonstrated. Cathie noted that this is the reason why public engagement is so crucial, and highlighted the importance of working in partnership and transparently with the public to make sure they are a part of the decision-making process for how their data is used.
Involving patients and the public in data-driven research is critical for ensuring that data are used fairly, and in an acceptable way that benefits society as a whole. By incorporating their perspectives, we promote transparency, enhance trust, and improve the overall quality of research outcomes. – Professor Cathie Sudlow
This conversation showcased how important lived experience is in achieving a balance between innovation and responsibility within the health data research sector. Without public involvement, we may see mistrust and concerns from the public about how patient data is kept safe and used. Public and patient involvement in the shaping of policy on data usage and transparency in health data research can ensure this field reflects the needs and concerns of those most impacted by its outcomes.
The UK Health Data Research Alliance has done a lot of work to ensure trust and transparency within this sector, including co-producing best practice transparency standards with the public. Read more here.
Bringing the science to the public
Health data and health data research are complex topics and, with limited awareness of health data usage and valid concerns about data privacy, it isn’t always an accessible space.
This discussion was the perfect example of how we can make the topic of health data more accessible to the public. We need to create more forums where the public and scientists can come together, talk about real life issues and learn from each other. By doing so, we can strengthen the health data sector and build stronger public trust.
Thank you to the organisers at Orkney Science Festival for hosting our talk and a big thank you to Anna Woolman, Cathie Sudlow and Chris Monk for the inspiring conversation. Keep an eye out for the recording of this talk which will be available and shared soon.
You can read more about our patient and public involvement and engagement work at the BHF Data Science Centre here.
Read the accompanying blog post from Nicola Monk, our PPIE member: Nicola: My personal experience as a public contributor supporting Orkney International Science Festival.