On 12 May, NHS Digital published its plans to share patients primary health care data collected by GP practices.
Background
- On 12 May, NHS Digital published its plans to share patients primary health care data collected by GP practices.
- This new scheme, the General Practice Data for Planning and Research (GPDPR) service, will provide pseudonymised patient data for medical research and health services planning purposes.
- Everyone currently has the option to opt out by the 23 June this year, before it begins on the 1 July.
- On 8 June, Ministers announced that implementation will be delayed until 1 September to “use this time to talk to patients, doctors, health charities and others to strengthen the plan, build a trusted research environment, and ensure that data is accessed securely.”
Position
The Liberal Democrats wrote to the Health Secretary calling on him to pause the programme and run a full public information campaign. Liberal Democrat MPs and peers have also challenged ministers in Parliament demanding a delay.
As the Secretary of State has pointed out himself, data has been key in the pandemic. I agree with him, having previously worked briefly for NHS Digital, that data saves lives. I also agree with him that patient data belongs to the patient, and one of the things I learned during my time working in data is that public trust is key. So why will the Secretary of State not pause this data collection programme, which patients must opt out of by 23 June, to mount a full public information and communication campaign and be explicit about how people’s sensitive data might be used and by whom?”
Munira Wilson MP - 7 June 2021 - COVID-19 Debate in the House of Commons
The Royal College of General Practitioners, the Doctors’ Association UK and the British Medical Association have all expressed concern about the adequacy of communication with patients about the proposals for data sharing. From the answer that the Secretary of State gave to the Opposition Front Bencher—the right hon. Member for Leicester South (Jonathan Ashworth)—and to my hon. Friend the Member for Twickenham (Munira Wilson), he obviously disagrees with that, but in the interests of making data-based decisions, can he tell the House what his Department is doing to assess the level of patient awareness about what will happen if they do not opt out by 23 June?”
Alistair Carmichael MP - 7 June 2021 - COVID-19 Debate in the House of Commons
In 2013, the Government wrote to every household to explain the care.data project. This new scheme has had no such communication with the public. As people hear about it, they are increasingly concerned about the breadth of data that will be captured. Will the Minister agree to use the delay to ensure that every adult in England is written to as a matter of urgency, including an opt-out form they can use if they so choose?”
Baroness Sal Brinton - 8 June 2021 - COVID-19 Debate in the House of Lords
- We are pleased that our calls have been heard by ministers and the programme has now been delayed until 1 September. A data protection impact assessment (DPIA) must be published as soon as possible. Pending the results of the DPIA, should the programme proceed, any additional time must be used to properly inform the public about the plans via TV and social media adverts, as well as formal letters posted to every household in the country.
- The Government has made no effort to communicate what this initiative means for patients, how patient confidentiality will be maintained and what the data will be used for. They cannot expect the public to make an informed decision without readily available information and an appropriate amount of time to opt out of their data being shared.
- There are good reasons to collect patients’ health data and for it to be made available for research and health services planning. The Liberal Democrats have always supported efforts that allow policymakers to make more informed decisions, as we hope this will, and we support the collection of health data, as we believe it helps save lives. However, we also strongly support the right of the individual to choose whether to share their data or not.
- All personal information must be handled with extreme care, and nothing that could be identified to an individual must ever be shared without their expressed permission. Data and privacy should always be the priority when handling patients’ health data.
- NHS Digital, the body collecting the information, has stated that they will never sell patients’ health data. They will only ever share it for research, planning and policy development purposes, including to private sector organisations, and will never share or sell it for advertising, promotional or market research purposes. We are seeking assurances from ministers and NHS Digital that this is the case, and calling for the strongest possible safeguards so that this data is not used for anything other than research and planning. Charges are made to third parties making data access requests to cover the costs associated with curating the data and the rigorous governance processes.
- Grim experience has taught the British public to be wary of trusting the Government with its sensitive personal information. But the Government's answer can't be to collect and share our data in secret. It must gain society's trust through honesty, transparency and rigorous safeguards.