The sad and joyous end of care.data

Following the Caldicott report, now is not the time to put the issue of the use of data on a back burner, writes James Norman, EMC public sector CIO and Highland Marketing industry advisor

It is sad and also joyous that the care.data programme has finally been put to rest. Sad because the potential would have enabled the NHS to leap forward in its abilities to identify and treat, prevent and cure diseases, develop new drugs and bring a new era of collaboration with the private sector. Joyous because this programme was so badly damaged by poor communication and media misrepresentation, that it has tainted all projects that involve the sharing of data and collaboration between public and private.

I look forward to hearing from the National Information Board as to how they will take the best of the care.data programme and build on it whilst addressing the public fear factor. Issues of security, of appropriate use and, most importantly, of trust, must be addressed. If an attempt is made to reintroduce by stealth, it will set the NHS back years and the ramifications will be huge.

The NHS is facing its most challenging period ever and needs as much opportunity and support as it can get. Better use of the data that it holds has been shown to improve patient outcomes and reduce costs. The challenge has always been the perception that data will be abused if shared. There is compelling evidence to show that patients’ data can be secured in facilities much more securely than where their data currently resides.

The report that was produced by Volterra, Sustaining Universal Healthcare in the UK: Making Better Use of Information, back in 2014 identified the potential opportunities that the NHS could benefit from if it used information more intelligently. The outcomes for patients could be significantly improved and the savings to the NHS ranged from £16bn to £66bn over the years.

We cannot allow the data to be stored and not used to improve services, but we must ensure there is a robust governance process and defined protocols for how the data is used. Public trust must be gained and the way to do this is through transparency and honesty. Now is not the time to hide or cut costs by doing things on the cheap. Now is also not the time to put the issue of the use of data on a back burner because it falls in to the too hard pile. It must be tackled quickly so that the NHS can take advantage and hopefully use the insight gained to help support it in its time of need.