By Alex Kafetz
Dame Fiona Caldicott’s long awaited review into data security, consent and opt outs was published yesterday. As a member of the National Information Board’s Maintaining Public Trust sub-committee, I was privileged to have been involved close up with Dame Fiona and her team; and was one of the hundreds of people spoken to as this tricky matter – in what way should patients and the public be able to have control of who has access to their data – was considered. Here are some reflections following publication:
It was almost inevitable that on the day the report came out, the Government should announce the care.data programme has been closed. Clearly this had to happen. The brand was just too tarnished. This doesn’t mean the principle was wrong. We need linked data across health and social care to truly understand whether we are, as a system, improving the wellbeing of the population. Indeed, if we don’t solve this issue, we are risking public health by not providing health planners with the information they need. The new approach to this needs a home, i.e. with NHS England or NHS Digital (formerly the Health and Social Care Information Centre); a senior responsible officer (SRO); and a speedy new policy.
We welcome the inclusive phrases like “all organisations that use health and social care information.” I argued, passionately at times, for language such as this. I was worried that what I call “reputable private companies” such as data analytics and business intelligence businesses might have separate rules than not for profits because of their ownership structure. I’m delighted to see this isn’t the case.
No turning back
Whilst acknowledging the Department of Health is consulting on the recommendations, we cannot have Caldicott 4. As Brexit means Brexit, we should not be lobbying for more inquiries because not everyone will be happy with the recommendations. One example of this being the recommendation that social care data doesn’t have any special privileges. Whilst Dame Fiona has been compiling the report we have seen inertia in the health and care system. Data is not flowing or linking. Clinical Commissioning Groups do not have the intelligence needed to plan services; researchers don’t have the data to investigate new treatments, and analysts don’t have information to measure and report on outcomes.
Dame Fiona was frank in her launch speech at The Kings Fund that she doesn’t know the cost of implementing her report and that there are a number of practicalities that need consideration. One example was ensuring if a patient opts out at one GP, and then changes GP, can this opt out be reversed by our new practitioner? NHS Digital needs to implement this quickly to meet the points above.
Finally I’d like to make a plea to the reputable private companies who should be able to keep accessing the data needed for their products and services that improve patient care and the health service. We need to be even more transparent in the work we do, to ensure we are above suspicion in our intentions and uses of the data. I’d like to see each supplier holding data to sign an industry charter which commits to letting patients know whose data they use, what they do with it and why. I’ve mooted this already to Tech UK and will continue to lobby for such a system.
Hopefully now Caldicott is published we can return to using the data to hold our public services to account and continue to improve public health and the NHS.