Thank you for contacting me about NHS Digital’s plans for personal medical histories to be shared with academic and commercial third parties. I share your concerns about the way in which these proposals are moving forward.
The benefits of collaborative planning and research have been made clear over the past year as the NHS, the wider health and social care sector, academia, the third sector, the private sector, and the public at large have all bound together to tackle the challenges posed by COVID-19.
It is in this spirit that I fully support the principle of improved data sharing, which is an important step towards planning and research improvements that will ultimately save lives through improved healthcare.
However, for data sharing to work, it must be built on trust. I share concerns that have been raised by the Royal College of General Practitioners and the Doctors’ Association UK about the lack of communication with patients on this issue, and on the lack of consultation. Without consultation and clear communication with patients, I believe trust in this process is undermined.
For these plans to be effective, and for confidence in doctors and the wider NHS to be maintained, it is vital that patients whose data will be shared have a clear understanding of this process. There was a clear lack of public engagement, as the plans were effectively snuck out under the cover of darkness.
Without the proper precautions this system could easily become hijacked by unknown commercial interests for purposes unknown. The NHS in all its facets needs to remain publicly owned and I fear that NHS Digital has the potential of becoming part of a wider trend towards privatisation. NHS spending on private providers has more than doubled in cash terms since 2010. Likewise our health and social care system has become an increasingly fragmented and marketised system. Therefore the Government has set a precedent of using the NHS for private gain, and NHS Digital could easily follow this path if left unchecked.
Following pressure from myself, the Labour Party and campaigners, I am pleased that the Government announced a two-month delay to the rollout of the General Practice Data for Planning and Research (GPDPR) data collection programme.
It is now vital that Ministers provide assurances that these changes will be clearly communicated to patients. There must be greater transparency on which aspects of patient data will be made available; which third-party organisations will have access to patient data; how the use of patient data is limited; what patients’ rights and the mechanisms to opt-out are; and the safeguards in place to protect confidential patient data.
There must be a public consultation and information campaign to ensure affected patients are made aware of how their data will be used and their rights to opt-out. NHS Digital cannot move forward until these conditions are met and the Government rebuilds the trust it carelessly disregarded.