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Blog – Doing things better with data

Jimmy Black reflects on Holyrood Magazine’s Digital Health & Care Conference

I’ve just spent two very useful days at an excellent event, where I heard some of the best and most knowledgeable speakers talk about the great work that’s going on. But this event was not about self congratulation. It was about creating change.

The first and most impressive speaker was Caroline Lamb, the new Director of Digital Reform & Service Engagement for Health & Care, Scottish Government. Caroline made positive comments about digital innovation around Scotland, but seemed to feel frustration that new techniques which are proven to work … don’t always spread.

Dr Rhonda Collins of Vocera spoke about the number of things we can keep in our heads, and how many things we can do at once. She told us we expect too much of ourselves. Her example was a nurse trying to deal with patients while organizing emergency admissions on the phone to paramedics in a noisy ambulance. Cognitive overload costs lives.

I kicked myself for missing the Nesta presentations on breast cancer and prostate cancer apps, but I caught up with them afterwards. Called Owise, the breast cancer app helps patients organize their lives and their treatment, explains what’s happening to them and gives people useful questions to ask doctors. Something similar is coming for prostate cancer. Brilliant.

The reason I missed Nesta was a chat with David Alexander of Mydex, a Community Interest Company developing a place where people can keep their own data and share it with whoever they want. There was a running theme throughout the event that it was unreasonable to expect people to fill in the same information on the same forms many times.

Perhaps Mydex’ Personal Data Store is the answer … but would the NHS systems be able to read it, and would NHS personnel trust it?

Then I began to get frustrated. In session after session we explored the use of data and agreed that if we could all share what we know, so many good things could follow. We all appeared to agree, having heard evidence from studies and our own experience, that patients are happy to share their data if that leads to better healthcare, and cures for intractable diseases.

We heard about the clever things we can do to make incompatible systems work together … “interoperability” is the Holy Grail … and then we hit a big speed bump, commonly known as the GDPR. As several eminent experts told us, the GDPR makes specific provision for sharing data which can aid medical research. Yet every single Health Board, Council, Integrated Joint Board has its own policy on GDPR, and data controllers tend to be risk averse.

Erring on the side of caution seems irresponsible if it increases the risk of death by cancer. That’s just scary.

Then I heard an excellent presentation from Stephen Beattie of the Business Services Organisation in Northern Ireland. He explained how NI adopted an electronic care record several years ago which allows all vital patient data to be shared instantaneously amongst the people who need to see it. That’s common sense. That’s just what you’d expect of a modern healthcare system. Surely?

We don’t do that here. In fairness, we do share some things digitally, and occasionally by post, but it seems to be different everywhere you go. What’s wrong with us? Why can’t we do the simple stuff? It seemed to me that many of the people who could really sort this out … politicians, Board Chairs, Chief Executives, managers … were not at the conference.

Then there was a down to earth, realistic interview with Jonathan Cameron, Deputy Director – Digital Health and Care. He appeared to have a practical approach, and if I recall correctly he welcomed Microsoft Office 365 and also Microsoft Teams to our fragmented digital world. This was mentioned a lot over the two days.

When we all have Office 365, we’ll be able to talk to each other (literally, in online meetings), collaborate in strategic planning groups, share documents and communicate effectively, wherever we sit in the NHS, Council, Partnerships or Third Sector. That’s real progress, and us third sector types must not be left behind.

A final mention to Pennie Taylor, conference chair and health journalist par excellence, who kept reminding us to ask citizens what healthcare they want, and how they want it. She said citizens are the experts. That cheered me up.