This site is intended for health professionals only

At the heart of general practice since 1960

GPs win battle to stop researchers' records access

Ministers have scrapped plans that would have granted researchers access to identifiable medical records without patient consent after an uproar among GPs over patient confidentiality.

A passage included in the draft NHS Constitution, which could have granted researchers unrestricted access to patient data, has been dropped from the final document.

The Department of Health confirmed to Pulse that the omission would prevent researchers from having the level of access to data originally proposed, claiming the passage in question had ‘led to misunderstanding' over its plans.

‘The procedures under development will not allow the NHS to disclose a person's confidential records to researchers without consent and are intended to inform patients about research so that they can choose whether to take part,' said a spokesperson.

The BMA and the National Information Governance Board for Health (NIGB) had warned that the controversial passage could have seen patients invited to participate in trials by researchers - without being aware their data had been passed on.

The U-turn follows Pulse's ‘Common Sense In IT' campaign, launched in May 2007, which highlighted GP concerns over the need for confidentiality and explicit patient consent for sharing of electronic care records, and called for guarantees that only fully anonymised patient data would be made available to researchers.

Patient privacy advocate Dr Grant Ingrams, secretary of West Midlands LMC, welcomed what he described as long overdue clarity for patient rights and responsibilities.

‘We particularly welcome the U-turn over releasing patient information to researchers, including those from big pharmaceutical companies,' he said.

But concerns remain in some quarters that the wording of the constitution handbook may still leave the door open for researchers to records without patient consent.

Harry Cayton, chair of the NIGB, who had previously warned against having open researcher access to patient records, praised the DH for seemingly reversing its stance, but said further clarification was required to properly safeguard patient confidentiality.

"It is still not completely clear that what the position is and I think probably a great deal more discussion is needed,' he said.

The clarification comes despite intense lobbying from the Wellcome Trust and Medical Research Council for access to patient information and permission to contact patients directly regarding their involvement in trials.

Professor Bonnie Sibbald, deputy director of the National Primary Care Research and Development Centre, said it was right that only health professions should invite patients to take part in trials, but that properly accredited researchers should have access to anonymised or pseudo-anonymised data for research without consent.

‘That is the only system that we can see that makes research feasible,' she said.

Plans to allow researchers access to identifiable records have been dropped Plans to allow researchers access to identifiable records have been dropped

Rate this article 

Click to rate

  • 1 star out of 5
  • 2 stars out of 5
  • 3 stars out of 5
  • 4 stars out of 5
  • 5 stars out of 5

0 out of 5 stars

Have your say