Public Services > Healthcare

Care.data trial practices unveiled as objection concerns remain

Neil Merrett Published 13 July 2015

NHS England maintains no information will be extracted under care.data without data guardian's consent, as critics call for greater clarity on a patient's right to opt-out

 

Three out of the four clinical commission group (CCG) areas selected as pathfinders to trial the care.data programme have now published lists of surgeries that will participate in the testing process. However, NHS England has insisted that no extraction will take place without approval from the national data guardian Dame Fiona Caldicott.

Somerset, West Hampshire and Blackburn with Darwen CCG areas have all released lists of GP practices that will support the trials of care.data to better inform any national rollout of the scheme. The care.data project has been devised to share health and social care information on a patient for reasons other than direct healthcare.

Promoted as a means to support research and better understanding of healthcare needs within the NHS, the scheme has proved controversial with pressure groups and NGOs based around confidentiality concerns - leading to authorities having to delay the programme's launch last year.

On the back of these delays, four CCG areas have since been chosen to lead pilots of the project. The names of these participating surgeries are now beginning to be unveiled.

Somerset CCG has now listed 52 practices that will participate in the pilot, West Hampshire has unveiled 31 surgeries, while Blackburn with Darwen has announced the names of 23 sites that will be taking part.

Involved CCGs in Leeds are expected to release a list of participating practices at a later date, with invitations still open for surgeries to join.

With over 100 surgeries in place for the trials, NHS England claimed that no patient information would be extracted though care.data - even during the pathfinder stage of the programme - without the approval of national data guardian Dame Fiona Caldicott.

Medconfidential, a pressure group campaigning for better security around the management of medical records, said it welcomed the publication of lists of a number of GP practices trialing the scheme so that affected patients would now be required to consult with GPs and take a decision on whether to opt-out of providing their details for use beyond direct care.

Medconfidential coordinator Phil Booth added that the organisation still held "serious concerns" around care.data, not least around ensuring patient understanding of the programme.

"Several key elements, such as the legal directions redefining the care.data scheme itself and how patient objections will work have yet to be issued," he said. "Neither have regulations to define some of the 'safeguards' the government claims to have put in place (e.g. clarification of the over-broad purpose 'the promotion of health', which legitimises commercial re-use; and 'one-strike-and-you're out' sanctions for data misuse/abuse)."

Outside of care.data, Booth also highlighted concerns over the potential failure by NHS England to honour hundreds of thousands of wider 'type 2' (9Nu4 code) objections received from patients wishing to prevent the Health and Social Care Information Centre (HSCIC) from passing on personal information collected from care contexts other than GP practices.

"The 9Nu4 code relates to ongoing releases of data, and could - and should - have been acted upon regardless of the status of care.data itself," he said.

In response to the concerns, HSCIC said patients between late 2013 and early 2014 had been given two choices concerning objecting to their personal information being shared for purposes other than direct care.

"A 'type '1 objection prevents any data from leaving the GP record for purposes other than patients' direct care," said the organisation in a statement. "The effect of a 'type 2' objection was generally understood to allow information to flow from the GP to the HSCIC, but stop the HSCIC from sharing identifiable information about patients for any purpose other than direct care."

After delaying the implementation of care.data last year to review feedback and concerns from patients, health professionals and other stakeholders, HSCIC said it chose not implement type 2 objections, as no data was taken from GPs as part of care.data.

By November last year, HSCIC said it had been asked to progress type 2 objections received, but its caldicott guardian - the position responsible for protecting confidentiality in a UK health organisation - outlined a "flaw" within the wording of the opt-out that may have unintentionally prevented data from being shared for care purposes like cancer screening.

"The care.data programme is only implementing type 1 objections during the pathfinder stage with a review at the end of the pathfinder stage. If a patient in a pathfinder area has recorded a type 2 objection this will be treated as a type 1 by the HSCIC," said a statement. "This means that during the pathfinder stage, the HSCIC will not collect any identifiable GP data for purposes beyond direct care where a type 2 objection has been recorded, except the information needed to implement the objection."

HSCIC claimed it was working closely with health authorities and the national data guardian to work on balancing patients' wishes on protecting the confidentiality of their personal information, without potentially impacting on direct care by restricting data needed for cancer screening, electronic prescriptions and e-referrals.

Related articles:

Care.data's MPA 'red' risk rating may be out of date

NHS England yet to finalise care.data extraction launch date

Clarification concerns leave Caldicott unsure of care.data timing

Legal reform key to health department patient data drive








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