Health Minister Admits Errors in Primary Care Data Collection Scheme

Plans to use patient data in England to inform future healthcare "got off on the wrong foot", a Government minister admitted today.

Health minister Lord Bethell was giving evidence to a Commons committee about the decision to delay a programme that would see GP patient data made available to researchers and public companies unless individuals opted out.

He told MPs that he recognised the initiative was "a very sensitive project" and that it was vital to "take people with us".

The controversial programme had been delayed because "the pandemic has disrupted normal operations", he told members of the Health and Social Care Committee.

Last month, NHS Digital postponed its GP Data for Planning and Research programme (GPDPR) in the wake of calls for more effective communication with doctors and patients about the new arrangements.

The scheme had been due to start on July 1 this year but was delayed until September 1.

The move followed lobbying by health bodies, including the Royal College of General Practitioners and the British Medical Association, out of concern that patients did not have all the information needed to make an informed decision about whether to allow their data to be shared.

Concerns were also expressed that data collection could undermine trust between patient and doctor if the reasons were not fully understood and the shared information could be linked to individuals.

Three Tests Ahead of Data Programme

Jo Churchill, the minister for primary care and health promotion has now set out three new tests in a letter to GPs to help them prepare for the new data collection arrangements.

She said data collection would only begin when certain criteria were met. These were:

The ability for patients to opt out or back in to sharing their GP data with NHS Digital, with data being deleted even if it has been uploaded
A Trusted Research Environment is available where approved researchers can work securely on de-identified patient data which does not leave the environment, offering further protections and privacy while enabling collaboration amongst trusted researchers to further benefit patients
A campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices

Simon Bolton, NHS Digital interim CEO, said: "Patient data is vital to healthcare planning and research. It is being used to develop treatments for cancer, diabetes, long COVID and heart disease, and to plan how NHS services recover from COVID-19.

“This research and planning is only as good as the data it is based upon. We know we need to take people with us on this mission and this decision demonstrates our absolute commitment to do just that.”

Communication Deficit

In evidence to the Committee, Phil Booth, coordinator of MedConfidential which seeks to ensure the safe and transparent flow of NHS data, said public doubts about the scheme would still "rattle around" over the extent to which their data was anonymous, and he said that patients needed to be given information in "the language and in the level that they need".

The GPDPR programme would replace the General Practice Extraction Service, which has operated for more than 10 years.

NHS Digital has said that data collected from patients under the new scheme would collect information about a person's physical, mental, and sexual health. However, it would not collect the names and addresses of patients, except for a postcode in a coded form.

Lord Bethell assured the Committee that there was a "framework in place" to proceed with the programme, and he was chairing weekly meetings to ensure a "strategic focus".

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