NHS-Life Sciences Partnership

“The NHS should be “opened up” to private healthcare firms under plans which include sharing anonymous patient data, David Cameron is due to announce”
http://www.bbc.co.uk/news/uk-16026827

25 years ago I launched AAH Meditel. My plan was to give GPs free computers in return for anonymised patient data, which I planned to sell, primarily for life-sciences research. Today’s endorsement of this concept by Prime Minister David Cameron is therefore one that I welcome, but with some critical reservations.

AAH Meditel was successful in establishing a large database of over 5 million patient records and one competitor VAMP (now part INPS), who launched at the same time, did something very similar. The commercial models didn’t work (we were too far ahead of our time in so many ways) but it is the process we started, later built upon by others (notable EMIS) that has provided the foundations on which today’s announcement is made.

Over the past 25 years I and others in the primary care informatics community have learnt a great deal about the issues associated with building a longitudinal “cradle – grave” record and in particular those that arise when you start to share it and use it for both primary and secondary purposes distant from those purposes in the minds of those who created the record.

The value of this record is created by the willingness of patients to divulge often sensitive information to healthcare professionals. They do this primarily to get the care they need, but we also know that when asked, the vast majority are happy for it to be used for other purposes, particularly medical research, as long as all practical steps to protect their privacy have been taken. David Cameron has made it clear that such steps will be taken, but I have little confidence that Government understands what is necessary and possible or that the research community go much beyond lip-service in their attempts to address these issues. It is clear to me while the research community has no need or desire to compromise patient privacy it also has little willingness to take the problem seriously and risk creating a public backlash and worse, undermining patient confidence in the doctor-patient relationship that lies at the heart of health care.

I want to see health data used to support the British life sciences industry, but more importantly I want to protect patients’ confidence in their relationship with those who provide their healthcare. I believe if we get it right we can have both, but to do so we have to protect certain key principles:

1. The use of patient data for research is a privilege that patients grant not a right for researchers to take. Patients must be able to opt-out; we know that very few will choose to do so and by denying those who wish to the opportunity we create much unnecessary conflict.

2. It is not a simple matter to protect personal information and comprehensive anonymised data can often be easily re-identified. It is important that those concerned properly understand the risks and how privacy enhancing technologies can mitigate these risk if applied as part of an appropriate governance framework.

3. There must be an acknowledgement by the research community that their first duty it to respect the wishes of patients and the privacy of their data, not their research.

4. That we recognise while health data is a valuable resource its fitness for purposes distant from those for which it was collected is not as great as some might believe. We have much work to do to understand and improve the quality of data (see my blog http://wp.me/p1orc5-15 and http://wp.me/p1orc5-13 )

The BCS Primary Health Care Group published a discussion paper in March this year which I think provides a good starting point http://www.phcsg.org/main/documents/PrivacyandConsent.pdf

BCS Health have a much longer document in preparation “Fair Shares for All” which should appear soon. This provides an extensive review of the issue including a comprehensive review on patient attitudes on which I draw in making some of my statements above.

Let’s make the most of the opportunity, but please, be careful out there. Privacy is a fundamental human right, and should not be treated as an inconvenience by those wishing to use patient data for purposes other than care.