GP leaders in Birmingham have serious concerns about the region’s Central Care Record project to share patient information across health and social care.
In August this year, 17 health and social care organisations across Birmingham, Sandwell, and Solihull went out to tender for a joint central care record system.
Project leaders say patients will be given the option to opt-out of the scheme. But Birmingham Local Medical Committee is strongly against the project and has several concerns, especially around patients not being able to give informed consent.
Dr Robert Morley, the executive secretary of the committee, told EHI that the LMC cannot support the project as currently proposed.
“It is the same opt-out model that we had with the Summary Care Record, and we feel very strongly that that’s not properly informed consent. Patients won’t know what they’re agreeing to,” he said.
The Summary Care Record is the national shared record promoted by the National Programme for IT in the NHS, which was repeatedly held by up rows over confidentiality and consent.
It was eventually given the go-ahead for a national roll-out on an opt-out basis by the present government.
Local publicity campaigns must be run before the SCR is implemented, but patients are ‘presumed’ to have consented to a record being created for them, unless they specifically opt-out.
Birmingham LMC believes that patients should be told exactly what data is going to be shared, with whom, for what purpose and how it will benefit them.
“We can’t understand why they won’t go for an opt-out model. If they are so confident that this is something patients want, why are they not letting patients opt in?” Dr Morley asked.
“What constitutes as sensitive information? That’s individual to the patient. Some patients who are HIV positive don’t have a problem with that being shared; but someone who has an ingrown toenail may not want that to be shared. All of this would be solved if people got to opt-in rather than opt-out.”
The aim of the project, which is run by NHS Central Midlands Commissioning Support Unit on behalf of local clinical commissioning groups, mental health, acute, community and ambulance trusts as well as local councils, is for information to be recorded once and shared between the providers.
“Initially only key diagnostics are going to be shared and then the subsequent data will be done after further consultation with the doctor and patient,” said Dr Morley. “They’re not sharing everything straight away and that suggests that they have some concerns about it.”
Another issue the committee has is that it is shared “across the local health economy”, but that in a fragmented NHS, it is difficult to pinpoint what counts as a local health economy.
“Social services don’t have the same principles of how to deal with confidential data in the same way GPs do. We have concerns on it being shared and social workers having a different perspective on when it’s appropriate to share it,” he said.
“We live in an NHS that is fragmented, with organisations such as Specsavers being counted as a qualified provider, [in which many organisations] might say they want access to it.”
He said that organisations, particularly commercial ones could feel excluded and argue that it is in the interest of the patient they treat to have access to this. “How are we going to decide what the local health economy is? These issues haven’t been thought of,” he said.
The LMC is also concerned with the cost of the project and Morley points out that information can already be shared across primary and secondary care, and the additional benefits of the Central Care Record are lacking in evidence.
“The cost and complexity with doing this and the capacity of people to deliver this are another concern. And the fact that clinical systems, particularly TPP’s SystmOne already includes having functionality to share records with secondary care providers,” he said.
The LMC has been vocal opponents to the Summary Care Record as well, because of the opt-out model.
Dr Morley said that the CCR project would allow a far greater amount of information to be shared than the SCR.
“The SCR has already happened anyway and there are the same issues here, but the data here is much larger, he said.
He added that if the project decided to go for an opt-in model, the LMC would feel more inclined to supporting the project, but that there would still be “concerns about what constitutes as sensitive data.”
The CCR project hopes to award a contract early next year, with a provisional go-live in early 2015.