1.2m patients continue to be ignored over objections to record sharing
NHS bosses are overriding the wishes of 1.2m patients who have opted out of having their medical data shared within and outside of the NHS, newly released statistics have revealed.
The figure, revealed today by the Health and Social Care Information Centre, is almost double the 700,000 objections that they had originally feared were being ignored and comes as a further blow to the Government’s ambitious record-sharing agenda.
But it comes as the NHS is finally going to start honouring the wishes of patients opting out of having their medical data shared, starting from next week.
So far, as previously reported by Pulse, all of these objections have been ignored by the NHS because they may otherwise have hindered patients from being called for important health screenings.
But a letter from health secretary Jeremy Hunt, also published this week, has instructed HSCIC to start honouring the objections from 29 April.
The offer to opt out of record sharing was first made to patients two years ago in the midst of the fallout over the care.data scheme – which will extract information directly from patients’ GP records, but which remains on hold pending a review into patient consent models.
Since then, people have been able to lodge two types of objections - type 1, which would stop extraction of data directly from GP records once care.data goes live, and type 2 which would block the HSCIC sharing any information it held on that patient, including from their GP practice, hospitals, or other sources.
Because today’s HSCIC release only covers type 2 objections, it does not reveal the potential full scale of patient objections to care.data.
Mr Hunt’s letter said: ’With effect from 29 April 2016, HSCIC is directed to establish and operate a system to process and uphold type 2 objections, where reasonably practicable and in accordance with the following principles.’
The HSCIC release shows that one in every 45 patients has registered a type 2 opt-out, although numbers differ vastly by region.
Phil Booth, coordinatior of privacy group medConfidential told Pulse: ‘Patients were offered a choice by Jeremy Hunt over two years ago, and it is about time the Department of Health delivered for the public.
‘Any loopholes must be clearly defined by Parliament, and not snuck through by civil servants looking to make their own lives easier. The collapse of care.data shows what happens when patient consent is ignored [and] we hope the politicians who run the NHS have learnt the lesson.’
The Government is still planning to roll out the care.data extraction of information directly from GP records once it has resolved the issues surrounding patient consent. Following the review, national data guardian Dame Fiona Caldicott has already shared her independent report with the Department of Health, but this has not yet been publicly released.
A spokesperson for Dame Fiona said: ’Dame Fiona looks forward to publishing the report in due course and to working alongside government and health and care organisations on the implementation of the recommendations.’
Who wants patient data and how can patients opt out?
What is special about care.data is that it will extract patient data from GP records for the first time and link it up with data the HSCIC already holds.
Since 2013, when the Government came under heavy criticism over its care.data plans, patients can lodge two types of objections to information being shared by them within and outside of the NHS.
The type 1 opt-out blocks patient information being shared by their GP practice with HSCIC and the type 2 opt-out blocks the HSCIC sharing any informaiton held on that patient.
Neither opt out was supposed to prevent information sharing for the purpose of direct care, which would include schemes like the Summary Care Record or invitation for treatments, and opt-outs do not block fully anonymised aggregate information.
But despite this, NHS officials have revealed that had they honoured the type 2 opt-outs, this would have prevented patients from being called to important cancer screenings.
In an attempt to simplify the process, the Care.Data Programme Board - which is overseeing the Government’s flagship scheme - has recommended that there should only be one type of opt-out to data being shared, dropping the type 2 objections before the full rollout of care.data.