Patients don't have enough information about electronic patient records and it is too hard for them to opt out if they want to, the British Medical Association (BMA) said yesterday (Monday 1 March 2010).
Following local piloting, patients' summary care records (SCRs) are now going to be uploaded to a central database across England. Five strategic health authorities – NHS North West, NHS North East, NHS Yorkshire and Humber, NHS London and NHS East of England – recently announced they were speeding up their plans.
Dr Grant Ingrams, Chair of the GP IT Committee, said: "The SCR roll-out is now happening too hastily. While we believe it has the potential to improve both the quality and safety of patient care, we are concerned at the speed because it means patients are very unlikely to be aware of what they are automatically being enrolled into."
John May, from the BMA's Patient Liaison Group, said: "An independent evaluation of the regional pilots found that seven in 10 patients in those areas weren't aware of the SCR, which meant they also weren't aware that their details would go on to a national database.
"There needs to be a higher profile national information campaign to ensure everyone can make an informed choice about whether or not they want to be included."
Mr May added: "We also think it is important that opting-out is made easier. At the moment there's no opt-out form in the patient information packs being sent to patients across the country. They either have to take the time out of their day to go and see their GP, or phone a call centre, or download a form from the internet and post it in."
Dr Ingrams (pictured) added: "We don't believe the national roll-out needs to be or should be done in a hurry. We would like to see it rolled out carefully, area by area, in a properly supported and evaluated fashion.
"This should ensure it improves patient care in the way it is intended to, while also protecting patient confidentiality."
Your comments (terms and conditions apply):
"Is it legal, fair and transparent? The information being sent out does NOT have an opt-out form. It has pleanty of other confusing data, but if you want to opt out, you need to download a form or request it by phone or post. How many vulnerable people do you know who will end up on the SCR through default because of this? A few years ago there was a suggestion for patients to carry a credit sized card onto which their record would be kept and updated, but apparently the public are not to be trusted with their own records and it would be better that a hacker steals someone's identity!!" – NJ, London
"A lot of NHS IT is rolled out too hastily, often before it is working well, and then we suffer the consequences of lack of trust in the system. There is also the problem that the remit for a particular product keeps changing and hence the cost keeps going up. In the case of SCR pilot, the big change was not related to the software but the consent model, which changed from implied consent, to consent to view. This I think was a good change. It particularly helps me in practice when discussing SCR directly with patients, as I can inform them that they will be asked each time an appropriate clinician wishes to view their SCR, that they can decline at any point, and that a request to view has to be made each time, and that consent once does not consent forever. I note that 7 out of 10 people are unaware of SCR. However, as a pilot practice for SCR I spoke to patients about their health records. Most were of the belief that hospitals already had access to the GP record and vice versa, and were surprised when this was not the case. There were of course those patients who felt that the information between them and the GP was sacrosanct and must not be disclosed ever to anyone, but they were a very small minority. At my practice we are open and transparent about SCR, we have amended patients registration documents to fully inform new patients about SCR, staff are available to discuss issues if required, opting out is very easy, a patient just ticks the box on the form, we have a very small opt-out rate. As part of the pilot process, we made suggestions that the GMS1 form should be changed, perhaps to an A4 size, to adequately contain and collect more data that needs to be collected such as ethnicity, first language, SCR etc. I do believe that there needs to be more high profile information to the public but not just about the summary care record – it should be about health issues in general. Issues such as when not to go to A&E, when not to call an ambulance, when to self-treat etc. Mainstream television programmes such as Coronation Street have a part to play in this, as a significant proportion of the public watch these programmes. In terms of SCR it would not be difficult to write in a small storyline that showed the benefits of a hospital being able to access this key data and also the converse effect. I agree that there should be more haste and less speed in the approach, however it does need to be understood that for the effective use of SCR there does need to be a critical mass of patients available to appropriate providers (out-of-hours, A&E, etc). Without this available in a local area it almost renders the SCR process useless, will not be used by practitioners, and will effectively lose impetus and credibility. It is therefore important to get the correct mix" – John Lyne, Bury
"As an NHS insider I have opted out of the NCRS as the potential for security and other problems is enormous. I couldn't recommend a system to others that I will not use myself. Stop this reckless roll out and review the pilot sites properly, then use a very high-profile publicity campaign to ensure patients know what they are letting themselves in for" – Name and address withheld