I met with Ian Gall today. He is the new chair of the Dorset CCG Public Engagement Group. Fascinating conversation to review how we can work together to ensure that the transformation journey we are taking is designed and created with the Dorset public at the core. Many of our initiatives, like the Dorset Care Record, support both the clinical excellence our STP will deliver, but also involve the public in co-creation of their personal record.
The conversation turned towards our plans around the use of data. We are lucky in Dorset to have some talented BI analysts and architects, and some of the work already created on a Trust by Trust basis creates great performance dashboards to enable the Trust management and clinicians deliver their services.
We have the Dorset Information Sharing Charter (DISC) that all local authorities and NHS partners, including all GP practices, have signed to agree that we will all use and share data appropriately for the good of the Dorset public. But the rules are changing. So how do we encourage the public to allow us to share and use their medical data?
We discussed that all our online spending habits through any number of online retailers, or the purchases we make through various supermarket membership clubs, our music selections, or book reading preferences are recorded, interrogated and in some cases sold to further the success of targeted marketing campaigns, product placement and services we might be interested in.
Even our banks do this.
So then, to medical records. That great untapped realm of data. The information we all consider personal and secret. The answers for potentially improving services, and the experience of using those health and social care services, including the outcomes of the treatment or care are locked away. Kept secret. Not to be shared.
We pondered another selfless and hugely generous, and yet extremely difficult decision many people make. Organ donation. Reminded most recently of a young lady, Jemima Layzell, the amazing 13-year-old who through her tragic death gave hope and life to eight people. Eight strangers. (http://www.bbc.co.uk/news/av/health-41208635/jemima-layzell-organ)
This made me think today. This amazing kindness rises from the tragedy of death and gives others hope. Such a shame you aren’t there to see it. To realise the difference, you have made to so many others. Not to have the glory of all the thanks and recognition, but to know that you have contributed something amazing, something life changing or even life giving to so many others. You have made an outstanding contribution as a human.
We now have the technology and the security and regulation to allow us all to be living donors. (Don’t worry this is not a call to organ harvesting from living people.) We can all be Digital Donors without giving up a single body part.
Our medical records, in splendid isolation are brilliant crafted records of our troubles and treatments and outcomes. Good or bad. Successful or otherwise.
What if we agreed to Donate our Records now? Whilst we were alive. So perhaps other people are helped to avoid a condition we might have, or an adverse result we had from a treatment, to benefit from a great result we had and to bring all that best practice to the health and social care services today. Now.
Wouldn’t you like to know you have contributed to society in such a way? To help others in need, perhaps even before they know they might need it?
Organ Donors and Blood Donors deserve our respect and gratitude. Their sacrifices and contributions help those in the direst of need when they need it most. When potentially all else is lost.
Would you be a Digital Donor?
We trust those professionals who care for us with our health and wellbeing, and we want the record of that relationship kept secret. We give up all sorts of secrets about ourselves unwittingly to banks, shops, retailers, service providers and so on. When was the last time you discussed your private lives with them? Yet we let them use our data with almost no thought.
Would you not want your record, suitably anonymised and secured used for the greater good? I’m not talking about selling to Big Pharma. I’m talking about the doctors and nurses and care professionals that look after us when we need them. Don’t we all want them to have the best out of all that data, all those records, all that knowledge?
I’d be a Digital Donor. Would you?