The well-known broadcaster and journalist Rory Cellan-Jones recently spoke at a showcase event in Birmingham organised by Health Data Research UK (HDR UK), the national institute for health data science. He has written about the event, entitled ‘Building a legacy for UK health data research infrastructure’, in his health technology blog.
In the speech, he discussed the challenge of how to ensure the public are fully aware of the many benefits to society from sharing their health data for research, especially when that research is undertaken by a pharmaceutical or technology company.
Rory is an enthusiastic supporter of the use of NHS data by the UK's medical research and technology sectors. He is keen to spread the knowledge about what sharing anonymised patient data for research has already achieved, as well as its potential, despite some negative press around past initiatives. He singles out the success of the HDR UK health data research hubs as centres of excellence, leading the way by involving patients and the public at all stages of their decision-making.
As a long-time patient of Moorfields Eye Hospital, he has a particular interest in the INSIGHT hub:
“I'm very pleased to see my data employed in this way, but patients can opt out of having theirs used if they wish.”
Rory cites the rapid development of COVID-19 vaccines and the need to quickly test their safety and efficacy as an example how sharing health data can save lives. He also highlights the importance of having a centralised organisation like HDR UK to oversee the pooling of data, which makes it much easier, for example, to monitor the efficacy or side effects of existing medicines.
Discussing the importance of open communication and consultation with the public, Rory highlights how biases in the system could be created if a lack of trust led to a disproportionate number of opt-outs from minority groups - hence the need to bring all sections of the community on board.
Finally, he touches on the importance of scale when it comes to health data, emphasising the UK's enormous advantage in having a National Health Service that covers the entire population. He finishes on a call to spread the word about the many advantages of sharing health data for research:
“Now all we have to do is get a simple message across to the public – the benefits of sharing that data outweigh the risks.”
You can read the full blog post here.
Image credit: Photo by Mathew Schwartz on Unsplash