New devices. New data?

LHSA is a member of the Health Archives and Records Group (HARG, https://healtharchives.co.uk/), which is a forum for bringing together people who have a research interest in, or are responsible for, health records. Over the last couple of years HARG has been reinvigorated by a dynamic committee that has been providing a programme of events to explore relevant issues in the care and use of health records.

Last week, Ruth went to HARG’s most recent session, a workshop on wearable medical devices and the data generated by them. (And to prove it here’s a photo from the day taken by our colleague Clare, who organised the event, Ruth’s on the right, talking to the the woman in green!)

The day included a number of shorter presentations with a longer discussion session in the morning and afternoon. The speakers were from a wide range of backgrounds (and this diversity was evident in the attendees too): information governance professionals, developers of wearable medical devices, clinicians, researchers using data from wearables and, of course, those responsible for archive collections.  

This is a new and constantly evolving area with people regularly using wearables now, from Fitbits for fun through to clinical devices to monitor conditions. Much of the day helped those attending understand what is currently available in terms of wearable medical devices and looked at the importance of the individual knowing what data about them is being generated and how it is being used to ensure the users’ ongoing confidence. Several papers demonstrated how much benefit can be derived from appropriate use of these devices in terms of adherence to treatment/exercise regimes, and that this then translates into fewer and/or quicker appointments with clinicians, and more sustained positive outcomes for the patient. So that continued confidence in the device, and the use of the data it creates, is crucial.

But from an archival point of view, the papers that looked at the kind of data that is being collected, whether and how it can be shared and used ethically, and how to ensure the data is authentic and has the right information associated with it to be meaningful were particularly relevant. The final paper of the morning looked at these issues in detail and was the basis of the subsequent discussion session which looked at the technology, the policies, the people and the training that should be considered in this context. Does the device measure what you want it to measure? Will the data be accessible for as long as it needs to be? Does the policy generated around the use of wearable medical devices establish who is responsible for the data and for how long? In terms of the people involved, we looked at what the users of wearables need to be able to use the devices effectively and to understand what data will be collected and how it will be used, with training being a strong aspect of this.

It was a really informative day, but perhaps more importantly it was a thought-provoking one. What information on wearable medical devices should be preserved in the archive: how are we going to capture this emerging and growing facet of 21^st-century healthcare?

HARG will be providing the slides from the presentations, and a report that will give an overview, on their website in due course. We will be contributing ourselves to the next HARG event, with Louise presenting on our case note catalogue and describing the methodology used.