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Phil Koczan: Time to regain trust in care.data

14 Mar, 14 | by BMJ

phil_koczanOver the past few weeks we have seen a lot of media interest around NHS England’s plan to bring health information together under the banner of care.data, which will allow the linkage of de-identified patient data from different care settings in a secure environment. Care.data will have various uses which include measuring and improving the quality of services delivered by the NHS, and facilitating access to the data by approved research projects.

There are several concerns that have been expressed in the media relating to consent, data security, risk of re-identification of the patient, control of access to the data, and potential abuse by commercial organisations. Clinicians, particularly GPs, are worried about breach of patient confidentiality and methods used to extract the data from GP systems. Many of these issues have been responded to by NHS England, but the messages have not been clearly or consistently communicated through the media with different messages reaching the public which at times have been exaggerated, incorrect, or confused.

In order to allow time to ensure that these concerns have been adequately understood and addressed, a six month pause has been announced so that additional stakeholder engagement can be undertaken, and if necessary, other safeguards can be considered.

It is important to recognise that the data released by the NHS will be covered by a significant and extensive governance arrangement to protect patient confidentiality, and that there are many potential benefits as we strive to measure quality of care within the NHS and develop research using routinely collected data. Potential uses include:-

  • Improving data quality. Data quality is important and initial effort will need to be focused on improving the quality of routinely collected clinical information
  • Understanding variation in care delivery. There is significant variation against published standards and guidelines, yet it is challenging to monitor against those standards using current systems. Anonymised extracts will allow better monitoring and understanding of variation so that unwarranted variation can be picked up and addressed.
  • De-identified data will be available to the NHS to measure and improve the quality of care with the potential for feedback to clinicians.
  • Anonymised aggregated data will be made available to the public to provide transparency into the quality of care delivered by the NHS.
  • Data to be made available to approved research organisations to support the development of research methods based on routinely collected data, giving a unique perspective of real patients that is difficult to obtain through normal clinical trials.

During this pause it is important that there is significant engagement with stakeholders who include, amongst others, the public, patients, clinicians, researchers, the media, and information governance experts.

It is essential to make sure NHS England make good use of this pause to gain the trust and confidence of those involved to maximise the potential benefits from the use of anonymised patient records and develop clearly defined “user cases” while recognising, communicating, understanding, and minimising the risks involved.

I personally believe that there is much to be gained by the use of data in this way, but it must be undertaken in a way that does not put the trust with patients and the public at risk.

Competing interests: I declare that I have read and understood the BMJ Group policy on declaration of interests and I hereby declare the following interests: general practitioner, chief clinical information officer for UCL Partners Academic Health Science Partnership, member of the RCGP Health Informatics Group.

Phil Koczan is a GP and clinical informatician.

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