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The NHS Care Records Service: the future for patients' notes

In April 2007, a handful of primary care trusts (PCTs) in England started the process of uploading the first electronic patient records onto the national NHS database, or "Spine".
This pilot, involving summary care records - initially containing information only about medications, allergies and adverse reactions - is the first stage of the government's ambitious project to deliver the NHS Care Records Service.
It follows extensive debate about the ethics, security and confidentiality of sharing sensitive health information electronically. According to a campaign group, called TheBigOptOut, thousands of patients have been downloading a template letter from their website to send to their GPs, requesting that their notes are not uploaded to the NHS Spine.
The campaign was set up to protect patient confidentiality and to provide a focus for patient-led opposition to the Care Records Service. TheBigOptOut website (see Resources) highlights the concerns of patients, such as Helen Wilkinson, one of the directors of the campaign, who spent two years getting her medical records removed from NHS databases after she discovered she had been mistakenly labelled as an alcoholic.
Nevertheless, in December 2006 the government announced that the summary care record pilot would go ahead, guided by the recommendations of a ministerial taskforce it had set up to look at the issues involved. The taskforce's report concluded that a summary care record would significantly improve the safety and efficiency of patient care.(1)

A question of consent
The Department of Health (DH) has agreed that the process for creating summary care records will begin with a public information programme, explaining to patients that they will have a defined period of time to review their proposed summary record. They will be able to view their records on HealthSpace (the online health area for patients, see Resources) or obtain a printed copy from their GP. Patients will then be invited to correct or amend their record and either offer consent for their record to be shared or to opt out if they wish.
After a realistic period (yet to be defined), it will be assumed that those patients who have chosen not to view their summary care record will have given implied consent for it to be shared.
There may be people who do not want their summary care record to be shared or uploaded, and ways of resolving this situation will be considered by a new advisory group, which has been set up to oversee the future development of the summary care record.
The BMA, represented on this advisory group, says that NHS Connecting for Health (CfH) has defined an "opt out" as sharing. This means if a patient asks to opt out, their summary record will be uploaded onto the Spine, but it will not be visible. Patients can then request that a blank summary replaces the original upload. However, the initial upload will still be traceable in the audit trail. The BMA's view is that if a patient asks to opt out, no information should be uploaded.
Dr Paul Thornton, a Warwickshire GP and one of the coordinator's of TheBigOptOut campaign, argues that patients who request to opt out could, ironically, jeopardise their privacy: "It is very difficult for people who have sensitive information in their records to defend their entitlement to privacy without the paradoxical effect of drawing attention to themselves or having their information disseminated more widely," he says. "It is essential that the profession takes all necessary action, on behalf of our vulnerable patients, to defend the records from the powerful vested interests who are seeking access."
Health minister Lord Warner has pointed out that a veto was offered to people in Scotland before the NHS began uploading a similar "emergency care record", but only 250 out of six million patients asked for their details to be withheld.

Scrutiny and the doubting
The government's plans to establish an electronic health records database were further endorsed by the Information Commissioner (the public information watchdog) in January 2007. The Commissioner scrutinised the plans after receiving a number of enquiries from people who had seen articles in the media. He says he can see potential benefits of electronic care records, but will be keeping a close eye on the accuracy of the information to be uploaded, the way people are informed about the changes and the systems that will be put in place to allow people to access their own information.(2)
The early adapter will highlight the practical issues involved in uploading patient data onto the Spine, and will influence how everybody moves forward. Feedback will be obtained and listened to from everybody involved - patients, doctors, practice managers and nurses.

Information sharing
Information sharing practices should be starting to think of moving away from the idea that practices keep records only for their own business needs, and towards the concept that healthcare records belong to patients.
"Practices should be talking to patients, discussing how they feel about sharing records and showing them copies of their summary record and asking if they are accurate - they can print them out in the practice and give them to patients to take home.
All clinicians must be ensuring that their data quality is good - not just to meet the QOF (Quality and Outcomes Framework).
The Royal College of General Practitioners (RCGP) is drawing up guidelines on the standards required for the new summary records, explaining patient consent issues and how to support those who want to opt out of sharing their records.

A new, open healthcare environment
All staff in the practice must be properly trained to understand the controls built in to safeguard patients' records, and ensure they have all signed confidentiality agreements.
"It's not going to be as big a deal as the QOF, but it will involve a different culture of including patients in looking at their records and sharing information," says Dr Braunold, CfH GP clinical lead. "People have not thought of patient involvement in this way before, and healthcare professionals are going to have to be much more open about what is in the records they make, knowing they are going to be shared.
"We need to improve security and be a lot smarter about electronic records, as they are now going to have a life beyond the surgery."

Practice workload implications
The biggest challenge of the next decade for healthcare professionals will be information governance: looking after the quality of information we have and sharing it.
Some think the introduction of electronic records is potentially hazardous when it comes to the practice workload; seeking consent to broadcast information at every consultation is potentially onerous. However, Professor Mayur Lakhani, RCGP chairman and a member of the ministerial taskforce, says the latter's report was a pragmatic way forward and the consensus now is that everyone should be focusing on the benefits of the electronic record for patients. In his experience, most patients are in favour of sharing their records electronically.
 "The key issue now is: how do we support patients and GPs?" says Professor Lakhani. "We need to look at how we can shape and influence the project, rather than taking extreme positions. Even if a GP does not believe in sharing records, the rights and needs of patients are really important.

Access story
Dr Brian Fisher, a GP at the Wells Park Practice in Lewisham, London, has no doubt that the concept of giving patients access to their records is here to stay. He has been sharing records with patients for 20 years on a programme that enables patients to see their records, either through a kiosk in the waiting room or online at home. Research has shown that, given the opportunity, 75% of patients will look at their records.(3)
"People have been almost universally excited about it - it is convenient, helps them better to understand what is going on and enables them to take part in shared decision-making," he says.
Numerous studies conducted at Dr Fisher's surgery and other practices show that sharing records improves patient compliance with treatment, with patients suffering from long-term conditions accessing and benefiting from their records the most.(4,5)

Practice good, practice now
How are practice nurses preparing for this change?   Generally, nurses are very good at recording consultations. Four elements will keep us on the straight and narrow - to allow us to be ready and willing when a first patient requests to see their records. Remind yourself of the NMC code around record-keeping, record accurate details, ensure your records are not opinionated or judgmental, and adopt the approach that you would like if someone was completing YOUR records!(6)

References
1. Report of the Ministerial Taskforce on the Summary Care Record. December 2006. Available from: http://www.connectingforhealth.nhs.uk/publications/care_record_taskforce...
2. Information Commissioner's Office. Information Commissioner's views of Electronic Care Records. January 2007. Available from: http://www.ico.gov.uk/about_us/news_and_views/current_topics/NHS_electro...
3. Baldry M, Cheal C, Fisher B, et al. Giving patients their own records in general practice: experience of patients and staff. BMJ 1986;292:596-8.
4. Britten N, Fisher B. Patient access to records: expectations of hospital doctors and experiences of cancer patients.
Br J Gen Pract 1993;43:52-6.
5. Dixon A, Fisher B, Honeyman A. Informed patients, reformed clinicians. J R Soc Med 2005;98:530-1.
6. NMC. A-Z records 2007. Available from: http://www.nmc-uk.org