“Say what you do, do what you say”

Paul Affleck, our Programme Manager, reflects on the recent use MY data “Say what you do, do what you say – trust and transparency around patient data” workshop

On Thursday 5 December I attended the “Say what you do, do what you say” workshop organised by use MY data. Hosted by the Met Hotel in Leeds, the workshop explored trust and transparency concerning research access to patient data. There was a particular focus on the challenging area of access for commercial use.

Session 1 Commercial access to patient data

The first session examined what patients think is fair and how informed are the public. Natalie Banner, from Understanding Patient Data, and Juliet Tizzard, from the Health Research Authority, presented fascinating research into what patients and the public think. There was plenty to debate, and we could have spent the whole day on the topic. One noteworthy point was that terminology and presentation can make a difference to how people respond. We need to be conscious of how we frame discussions so as not to lead people down a particular path. For example, if we start with the term ‘data sharing’ rather than ‘data access’, or speak of ‘industry’ rather than ‘commercial’ we could end up with different conclusions.

It struck me that the attendees were broadly in favour of commercial access to patient data. However,  there has to be transparency with appropriate oversight. The attendees also wanted the NHS and the public to share any benefits from commercial access.

Session 2 Update on data access developments

The second session focussed on data access developments with updates from NHS Digital, Public Health England and the Health Research Authority on the pledges they made to improve data access at use MY data’s last workshop. There was also a presentation from Health Data Research UK on how they are aiming to facilitate greater data use. There was plenty of progress to report but the audience questions revealed an appetite to go further!

Session 3 What about the patient groups?

The final session drew together the themes from the previous sessions and challenged the attendees to make suggestions. My impression was that there was enthusiasm for greater data use and support for the bodies that had given presentations. However, many of those present felt more needed to be done. In particular, engaging with underrepresented parts of the population and closer working of the many different organisations present.

use MY data deserve congratulations on bringing together the key relevant organisations with patient and public representatives. Health Data Research UK, the Health Foundation, Understanding Patient Data, the Health Research Authority, Public Health England, NHS Digital, the Independent Group Advising on the Release of Data and the Independent Advisory Panel on Data Release also deserve recognition for their engagement. Look out for the presentations and summary report when they are made available in the New Year.

Image credit: Detail from visual minutes by @bethkitchenart funded by Understanding Patient Data