A reflection on the loss of medical records

Digital Assistant Director, Chris Mackie reflects how the lack of an appropriate sticker led to the destruction of medical records.

I was very concerned to read about Dr Liza Morton’s experiences of having her childhood medical records destroyed. The lack of a ‘do not destroy’ sticker led to the loss of significant records of Liza’s care and treatment during the first 18 years of her life. Whilst it is unclear whether this was an oversight or a conscious decision, the act of destroying the records has had a huge impact on Liza as an individual and has implications for other people born with congenital heart conditions. 

Liza’s final words about “the desperate need to reform patient access to our medical information” resonates with work progressing in Scotland around Human rights principles in digital health and social care.  This is a project that the ALLIANCE have undertaken with Scottish Care and VoX Scotland.  Following a period of public engagement, we arrived at five principles – ‘people at the centre’, ‘digital where it is best suited’, ‘digital choice’, ‘digital inclusion’ and – significantly – ‘access to and control of personal data’. 

The vision for this final principle is that people should have ready access to the data that is held on them.  It should not be a matter of ‘subject access requests’ to obtain your medical or social care data from a public body or other agency, the data should be immediately accessible to the individual.  Thereafter, it should be for that citizen to grant access to some or all of that data to others.  This could be for a family carer, to provide to evidence of eligibility for a service, give information to a care provider, or for research purposes. 

ALLIANCE members are active in this space. In particular, Mydex have championed the concept of ‘personal data stores’, which aims to use human rights approaches to data collection, storage and sharing. You may be interested to read their recent ALLIANCE blog post on “Control, agency and guardianship”. 

Mydex have also been working with Macmillan Cancer Support on the Macmillan My Data Store project.  The utilises a personal data store to empower people affected by cancer to take control of their journey.  Another instance of personal data stores forms part of Blackwood’s Peoplehood project. 

This brings me back to Liza’s original blog, and the fact that the lack of an appropriate sticker led to the destruction of a huge amount of crucial personal data. With all the advances that have been made in digital health and social care, it is beyond obvious that a sticker (or lack of) is an out-dated indicator.  But not only are there more effective methods of achieving the required result, there are also models which promote people’s human rights, and empower them to be at the centre of decision-making around their health and care. Fortunately, we are now seeing real life examples of these coming to fruition. 

If your organisation is working in this field of innovation or would like to, please contact us as we facilitate moves forward. Likewise, if you as an individual have lived experience – positive or negative – please get in touch at dhc@alliance-scotland.org.uk.  

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