Dr Grant Ingrams answers questions from Dr Alistair Moulds on how patients can opt out and what the risks are for participating practices
What is currently happening?
The Summary Care Record (SCR) has the potential to be very useful in delivering healthcare – especially for unscheduled care – but the GPC still has serious concerns over how the scheme is being rolled out.
As reported in Pulse last week, Connecting for Health has been forced to suspend its accelerated rollout of the SCR, after the GPC raised objections to the information patients were being given.
In other areas hundreds of patients are ripping open their information packs and considering whether to join the National Programme for IT. In many cases they will come to their GP for advice.
How is the rollout being carried out?
Every patient in an area where the SCR is being implemented will receive a patient information pack, or PIP. Patients are encouraged to contact a national helpline (0845 603 8510) if they require additional information, but many will want to discuss the issues with their own GP.
All patients will receive the PIP whether their practice is participating in the SCR or not. This is because patients will have information uploaded to the SCR not only from GP practices, but also from other NHS services such as hospitals.
Is there evidence the SCR can benefit patients?
There is currently limited data regarding benefits, but this is not unexpected because of the early stage of the programme.
For any benefits to be realised, electronic records will need to be fully embedded into GP clinical systems, and clinicians must receive appropriate and timely training. Even then, the SCR is unlikely to be used regularly until the majority of patients in an area have one created.
Initially, the SCR was promoted for its potential to save lives in emergency settings – but it is now clear that this is unlikely to be the case. In the long term, its usefulness is likely to be mainly in unscheduled care.
Connecting for Health has commissioned another independent evaluation of the SCR from University College London – but its publication has been delayed. The GPC feels it is inappropriate to roll out the care record until the report’s recommendations have been considered and implemented.
How can patients opt out?
In three ways – by calling the helpline for an opt-out form, by downloading a form from the internet, or by telling their GP.
If a patient advises the practice they wish to opt out, the code 93c3 – refused consent for upload to national shared electronic record – should be added to their practice computer record.
Why has it been made so difficult to opt out?
Good question. The PIP should include an opt-out form, but Connecting for Health believes this would be too confusing for patients. But if patients are expected to read and understand the information and make a rational decision, it seems reasonable to assume they would equally be able to complete an opt-out form.
What happens to the records of patients who haven’t specifically opted out?
The first upload only includes prescriptions and allergies and is an automated process that requires no action by the practice. Under the ‘implied consent’ model, anyone not specifically opting out within the initial consultation period (a minimum of 12 weeks) will have their records uploaded.
This approach is not supported by the GPC as implied consent is only valid if patients are aware of the issues. The first UCL evaluation found that only one patient in seven in the pilot area was aware of the SCR, and there is little evidence this has changed. The Department of Health says it will now embark on a public consultation to ensure patients and GPs are informed, although this will need to be tested.
What happens to a patient’s records if they opt out after the 12 weeks?
The 12-week period is a minimum, and it is likely that in many areas upload of the SCR will take much longer. If the patient opts out after the 12-week period, but prior to the upload of the SCR, then all that is needed is for the 93c3 code to be added, and no SCR will be created.
If an SCR has already been created then a blank record replaces the existing one. If the SCR has not been used the patient can ask Connecting for Health to completely remove all this data.
If the SCR has been used, then although the SCR will become inaccessible to all clinicians, the data will be kept as part of the audit trail. This is in case of any future complaint related to clinical decisions made after referring to the SCR.
Who is culpable if there are errors when uploading practice records?
This is an untested area. The data controller for the SCR is the Secretary of State for Health and so any liability should lie outside the practice, but it is unclear what happens if there are errors or omissions in the content of practice records. Patient records are never completely accurate and up to date, but in general practice we are all aware of the limitations of records and can readily spot errors. We also check with patients regarding their past medical history. The issue is when secondary care clinicians and other non-GPs use the SCR.
In theory, PCTs are responsible for the quality of a practice’s data prior to upload, but if a practice has reservations about its data quality, it should not opt into the SCR until these issues have been addressed.
There may also be issues if the practice has received an opt-out form that has not been properly recorded.
How secure is the information in the SCR?
The physical security of the data warehouse is excellent and the software security also meets industry standards. The weak link is the users. All users will be identifiable through their smart card, but anyone determined on acting unlawfully will not be stupid enough to use their own login.
I have already been involved in a case of a PCT manager using a district nurse’s password to access patient information.
In truth, we will probably never know how many cases of inappropriate access have and will occur.
The Tories and the Lib Dems want to scrap the scheme in favour of local electronic record schemes – would this be an improvement?
No. Local solutions will not produce the same benefits, and are likely to prove at least as expensive and hard to implement.
Patients do not only fall ill near home, and are more likely to access unscheduled care when staying elsewhere. In addition many patients live on boundaries between areas, with their closest hospital not being in their ‘registered’ area.
Dr Grant Ingrams is a GP in Coventry and co-chair of the GPC’s IT subcommittee
The Summary Care Record