The GP-patient consultation is a pivotal part of everyday activity of the NHS. Whilst the reasons that a patient may decide to go to see his or her GP are diverse, it is clear that much information is exchanged in that consultation. Some of that information will be relevant for deciding upon the need for further investigations and examination, and even possible referral to other parts of the NHS. The data might therefore very useful at an individual level. However, the data, taken as a whole for a population, might also produce useful insights which are relevant for further research, and are therefore enormously beneficial for public health.

When a patient goes to see his/her own GP, normally the patient has an expectation that the consultation will be confidential. This is at the crux of the doctor-patient relationship.

1. Medical confidential data from an individual perspective

From April 1st 2013 there was a noteworthy change to the way in which the Department of Health collected information about patient health from GP record systems in England. Previously, mainly aggregate health data was collected and patients could sometimes opt out of having identifiable information from their own record uploaded to central systems. From April 1st, the newly-renamed NHS “Health and Social Care Information Centre” (HSCIC) began uploading identifiable patient information, without telling patients how they can opt out of this process – or even that they can.  The data uploaded included every patient’s NHS number, date of birth, postcode and ethnicity, together with details of medical conditions, diagnoses and treatments.

That information is held on HSCIC and other NHS systems where it will be used to analyse health trends and demand for services, improve treatment and provide evidence upon which local clinical commissioning groups can base decisions about service provision. The data will also be made available to outside parties such as researchers and for-profit companies, and this is where the concern that “data will be sold to the highest bidder” has emerged from in the recent media (see for example the Guardian, “£140 buys private firms data on NHS patients”, article by Randeep Ramesh @tianran 17 May 2013). The HSCIC say that it will be ‘anonymised’ before release, but the concept of anonymisation is highly controversial and it is unlikely that guarantees can be given about the possible re-identification of the data.

2. Medical confidential data from a population perspective

However, there is also a parallel consideration, which could be seen as a fundamental socialist goal of solidarity. Patient records in general practice surgeries constitute a unique resource that can provide evidence to help medical researchers improve their understanding of disease, develop potential new treatments and improve patient care. But patient information is both sensitive and private, and the security of personal data must be safeguarded. The Wellcome Trust in 2009 argued that Research has shown that the public are generally supportive of research. Two-thirds of people are likely or certain to allow ‘personal health information’ to be allowed for research – however, there is little public understanding of what this actually means in practice.

As such, the Wellcome Trust therefore believed it was imperative to improve engagement and awareness among the general public:

• there should be a national awareness-raising programme highlighting the importance of using patient records for research, describing the difference between identifiable and non-identifiable data, and explaining the safeguards that will be put in place to protect privacy
• information should also be provided locally through general practices, for example as patients register at a practice, and through posters and leaflets.

The Wellcome Trust argued that, “transparency is essential, and it should be clear that patients can opt out of the use of their identifiable information in research if they wish.” For example, there may be times when it might be useful to know how agents of the NHS themselves behave in making decisions, for example to what extent GPs comply with NICE guidance, and to look for any reasonable deviation from ‘best practice’.

There is a plethora of approaches which could be taken to a ‘train of enquiry’ in how information has handled at GP level. The aim of this Committee is not to go on a ‘fishing expedition’ about all the uses of information at a GP level, for example incentives in making clinical decisions or ‘Nudge’.

The aim of this proposed Committee, for which applications from any interested parties are invited, including from General Practice, academics, doctors in other specialties (especially public health), and patients themselves, is to consider primarily whether patients in the NHS are aware of their ‘rights’ about the information they provide into the NHS, and how the needs for patient confidentiality at an individual and population level can be reconciled from the perspectives of the patient, the researcher, and other interested parties.

Members of the Committee ideally would therefore have to keep themselves familiar with recent policy developments which are relevant, including NHS information governance  (including NHS England) and the views of the research councils (including the Wellcome Trust), as well as be aware of the approximate direction of travel of the implementation of the Health and Social Care Act (2012) and EU Data Protection Regulation. It would also be useful if members of the Committee are aware of the current activities of campaigning groups such as Medical Confidential or Liberty, who have tried to raise awareness of this issue previously, and continue to work for the pursuit of that goal.

Thanking you in anticipation.

Useful background reading

http://medconfidential.org/briefings/

http://www.wellcome.ac.uk/About-us/policy/Spotlight-issues/personal-information/gp-records/index.htm

£140 buys private firms data on NHS patients: http://www.guardian.co.uk/technology/2013/may/17/private-firms-data-hospital-patients (Randeep Ramesh, 17 May 2013, Guardian – @tianran)

GP patient data boosts research: http://www.gponline.com/News/article/1014146/GP-patient-data-boost-research/