Protecting your medical confidentiality

As of February 18th, care.data uploads have been delayed a second time, for a further 6 months. Uploads will take place in a number of ‘pilot’ practices, starting sometime in the Autumn – locations as yet unknown. For more information on what to do if you have concerns, visit our ‘How to opt out‘ page.

medConfidential campaigns for confidentiality and consent in health and social care, seeking to ensure that every flow of data into, across and out of the NHS and care system is consensual, safe and transparent.

medConfidential is an independent, non-partisan organisation working with patients and medics, service users and care professionals, and drawing advice from a network of experts in the fields of health informatics, computer security, law/ethics and privacy. We believe there need be no conflict between good research, good ethics and good medical care.

*LATEST* Care Bill in Parliament on May 7th

Following public and professional outcry about care.data, the sale of patient hospital records by the Health and Social Care Information Centre (HSCIC) and other issues that led to the latest ‘pause’, the Government added a number of amendments to the Care Bill at Report and Third Reading stage in the Commons. These will be debated in the House of Lords on May 7th.

We commented on the proposed amendments at the time, but the amendments that the Government brought forward are seriously flawed, failing even to deliver what the Secretary of State has publicly promised. You can read more in our House of Lords briefing on the Care Bill.

While some things the Government proposes to do could be a step in the right direction, they are not nearly enough. Positive moves such as putting the Confidentiality Advisory Group (CAG) onto a statutory footing are undermined by making CAG responsible for advising on a much wider range of HSCIC’s activities. This would stretch a body with a particular expertise and remit to cover purposes for which it was never designed and, more importantly, it misses the point that the Information Centre is not the only body lacking appropriate oversight.

As well as putting patient opt out on a statutory basis, medConfidential supports putting the Independent Information Governance Oversight Panel (IIGOP), chaired by Dame Fiona Caldicott, onto full statutory footing. This would by no means solve every problem – there’s much more to be done – but we believe that independent oversight of the handling of patient and service users’ information across the whole health and social care system is an absolute prerequisite for rebuilding and maintaining public trust.

care.data Advisory Group

Since March 2014, medConfidential has sat on the care.data Advisory Group (CDAG).

Having been one of the leading critics of abuses of NHS patient consent and confidentiality – in particular the care.data scheme – since we formed in early 2013, medConfidential continues to engage with NHS England, HSCIC, the Department of Health and other responsible bodies in pursuit of our stated goal; to ensure that every data flow in the NHS and care system is the best balance of consensual, safe and transparent.

Given NHS England’s public acknowledgement that things had gone so terribly wrong, we decided to engage with the care.data Advisory Group on the condition that meeting minutes and papers would be made public. We hope this will prove to be a constructive way to ensure all future plans meet the demands of patient confidentiality, enhance the protections around legitimate uses of data and provide the confidence that comes from proper transparency.

After discussions at the second CDAG meeting, NHS England posted an open letter to stakeholders, to which we replied.

You can read our open letter to NHS England which covers the proposed ‘pilots’ in the Autumn and “phased roll out”, past and future communication with patients, lack of consultation with Dame Fiona Caldicott’s oversight panel, our proposal for a ‘Health Research Remote Data Laboratory’ for safe research, changes to legislation in the Care Bill, and the arbitrary “6 month” deadline.

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