The patient voice in the expanding data world
Paul Affleck, our Programme Manager, reflects on a recent use MY data event in Leeds.
On Thursday 22 November I attended 'the patient voice in the expanding data world' event organised by use MY data. Hosted by the Queen's Hotel in Leeds, the talks and discussions covered a breadth of topics. Opt-outs, consent, data donation, Local Health and Care Record Exemplars, and the General Data Protection Regulation (GDPR) all featured.
Becoming research participants
Since active engagement is very much use MY data's trademark, we became research participants as well as attendees. Health Psychologist Dr Fiona Fylan introduced the JoinedUp Yorkshire and Humber research project and challenged the room with a series of case studies on potential data sharing. I hope our small group responses prove helpful - the case studies certainly generated great interest and enthusiasm.
Later we participated in research led by a team from Newcastle University. They were seeking to understand our individual perspectives. Most importantly, on how we wanted, or do not want, our routinely collected data used for research. They used ECOUTER, a research method I have not come across before. It is similar to a mind map exercise and involved intense discussions and bundles of Post-it notes. The study was funded by Connected Health Cities, North East and North Cumbria and it will be interesting to see the results.
Where researchers are struggling
Professor Adam Glaser gave a passionate talk about the need to make better use of routinely collected health data to inform services for adults living with and beyond cancer. The audience expressed frustration at the multiple layers of permissions that are needed to access data for worthwhile research. However, there was also sympathy for the custodians of data. They are criticised both when they grant access and when they deny it. GDPR provoked annoyance but in discussion the point was made that GDPR requires concision, clarity and transparency so it could well be on the researcher’s side.
Summing up
Dr Helen Bulbeck, a use MY data Patient Advocate and Director of the brainstrust, made a sobering point towards the end of the day. She expressed a sincere desire to move beyond ‘them and us’ and for patients and professionals to work together. It was definitely heartening to see such a mix of patients, carers, data professionals, clinicians and researchers working together on an equal footing. If you get the chance to attend a future use MY data event I would strongly recommend going.
Thank you to the Leeds Institute for Data Analytics, Health Data Research UK and NHS Digital for supporting the day.
Image credit: Queens Hotel Leeds by Chemical Engineer CC BY-SA 4.0, from Wikimedia Commons.
