March 1, 2014

expert reaction to proposed new laws on medical records

In response to public concerns about the care.data scheme health minister Jeremy Hunt announced legislative plans including providing a legal guarantee that confidential medical data will not be sold for commercial purposes and that patients’ rights to opt-out will be respected.

Professor Sir Simon Wessely, King’s College London’s Institute of Psychiatry, and President-Elect of the Royal College of Psychiatrists said:

“It is excellent to see that NHS-E is indeed responding swiftly to the concerns that have been expressed in many quarters.  Many will particularly welcome the strengthening of the sanctions for corporate misuse.  But it is perhaps more important that there is no headlong rush towards a “quick fix” here, and I hope that NHS-E will take as long as is necessary to ensure that the new arrangements are not just “fit for purpose” but are widely seen and acknowledged as such.”

Liam Smeeth, Professor of Clinical Epidemiology, London School of Hygiene and Tropical Medicine, said:

“These look like sensible proposals that and are really a welcome tightening up of procedures. My hope is they will reassure the public that their confidential data will only be used responsibly and that they will not be able to be identified from it. The benefits to the NHS and the health of the population of England of being able to use these data are huge. The new explicit legislation will, I hope, mean people do not feel the need to opt out but will allow their data to go forward and be used for the good of all.”

Professor Peter Weissberg, Director of Research, British Heart Foundation, said:

“The British Heart Foundation  welcomes what appears a genuine attempt by government to rectify some of the issues that have emerged over the past couple of weeks

“What this appears to do is to enshrine the underlying principles of who controls the data and who has access to it (or perhaps more importantly, who doesn’t) in law, which is what the data watch community was asking for. Hopefully, this will provide the reassurance over data handling that some patients were concerned about.

“However, as ever,  the devil will be in the detail and there is always a risk that rushed legislation can sometimes backfire.  We will need to see exactly what the proposed legislation looks like before we can give it our full backing.”

John Parkinson,  Director of the Clinical Practice Research Datalink, said:

“The use of anonymised health record data to improve the delivery of care based upon up to date clinical guidelines and the flow of new and powerful treatments cannot be off anyone’s list of important tasks. Neither can doing it in a way that ensures there is trust in the system.

“This all means maximum use of the anonymised data under very tight control, noting that some of the researchers do work for pharma companies and are required to ensure that medicines in everyday use have the right balance of benefit to risk.

“The NHS is unique, based upon a number of important factors, in being able to provide anonymised data, for what are reasons of excellent Public Health. It also needs to be at the forefront of data stewardship, trust and motive. These moves are part of that process that build upon the already large contribution of the use of data in the interest of public health that has been on going without detriment to privacy for many years.”