Make care.data opt in or we will opt patients out, say GPs
Exclusive Almost a third of GPs say they intend to opt their patients out of the care.data scheme if NHS England doesn’t accept calls for the scheme to be run on an opt-in basis.
Pulse’s survey of more than 400 GPs reveals that 31% of respondents said they would opt patients out - despite this being unlawful - while only 32% said they would not be opting patients out.
GPs who answered the survey expressed concern that patients were not fully aware of the scheme - after a botched national leaflet campaign about the scheme only reached a third of households - and may confuse it with other schemes which directly benefit patient care, like the summary care record.
Many GPs also said that inadequate safeguards and a lack clarity of where data can be shared and what it can be used for were behind their decision to opt patients out.
As part of GPs’ contractual requirements, they must inform patients about the scheme - which was delayed in February to address the lack of public understanding - and are not allowed to opt them out of the scheme en masse.
Pulse has already revealed how Oxford GP Dr Gordon Gancz received a letter from his area team threatening his contract after notifying patients that he intended to opt them out of the scheme - with the option to opt back in.
The area team later rowed back on the correspondence, saying it was a ‘misunderstanding’, and that practices wouldn’t be liable until after data have left the practice.
The ICO has said GPs could be found liable if patients complain they were not informed, and NHS England has been unwilling to commit to funding a second awareness campaign to replace the national leaflet.
The GPC is lobbying for the scheme to be operated on an opt out basis, after GP leaders at the annual LMCs Conference in York voted for an overhaul of the existing model, including a push to have data pseudo-anonymised before it left the practice.
Dr Jeremy Luke, a GP in Crawley said that he supports the project’s aims but argues it has sought to shift blame and responsibility for the scheme to GPs.
Dr Luke added: ‘Care.data is a fantastic research tool and used properly could help drive change that will benefit us all. The problem is that the central bureaucracy of the NHS has ignored the rights of individuals.’
‘It has failed to consider the real concerns over the leakage of identifiable personal data. It has, as usual, tried to blame GPs for their own failure to engage with and listen to the views of patients.’
Dr Kamlesh Garg, a GP in Ecclestone, Lancashire, said: ‘Initially most patients are willing to join the scheme as they feel it is a good idea if the emergency doctors knew about their medical conditions.’
‘But once [we have] explained that their records could be seen by non-medical people and could be used for pharmaceutical research purposes, they seek to withdraw consent.’
However, Dr Rosie MacRae, a GP in Rainford, St Helens, told Pulse opt outs in her surgery currently stood at 20% and that she would not opt the rest out, she said: ‘Despite all [the awareness activities at the surgery] plus the national leaflet drop (missed by most of the patients, I have asked), I doubt if all patients are aware of the scheme and its implications.’
‘Furthermore, it has also taken away clinical time as we have had to explain the scheme and the choices to so many patients during consultations.’
GPC Chair, Dr Chaand Nagpaul told Pulse that they were campaigning for care.data to be made opt in, but that the issues with the scheme extend beyond this, and the GPC was also trying clarify how data would be used in future.
Dr Nagpaul said: ‘What this survey does show is, it demonstrates the degree of concern amongst GPs about the whole programme and from our end, and we’re concerned on a range of issues beyond the opt in- opt-out.’
Eve Roodhouse, programme director for care.data, told Pulse: “Care.data aims to support entire communities, in line with the NHS’s founding principle to serve everybody in our society.’
‘Data that underpins and reflects the needs of all of our communities is therefore needed to plan services most effectively and reduce health care inequalities, which is why the opt-out model is proposed by NHS England. However while it is important that people are properly informed about the aim of care.data, it is equally important that people know that they have the choice to opt out if they wish.’
- Yes -130 GPs (31%)
- No - 136 GPs (32%)
- Don’t know - 157 GPs (37%)
About the survey: Pulse launched this survey of readers on 1 July 2014, collating responses using the SurveyMonkey tool. The 29 questions asked covered a wide range of
GP topics, to avoid selection bias on any one issue. The survey was advertised to readers via our website and email newsletters, with a prize draw for a Samsung HD TV as an incentive to complete the survey.
As part of the survey, respondents were asked to specify their job title. A small number of non-GPs were screened out to analyse the results for this question. These questions were answered by 423 GPs.