Do summary care records have the potential to do more harm than good? NoBMJ 2010; 340 doi: https://doi.org/10.1136/bmj.c3022 (Published 16 June 2010) Cite this as: BMJ 2010;340:c3022
I recently received a leaflet from my local NHS updating me about changes to the way my health information will be stored and giving me the opportunity to opt out of the summary care record. I wouldn’t dream of opting out of this. I am delighted to see progress—eventually—being made towards introducing a joined up system for electronic patient records.
It is impossible to be a patient or to practise medicine without being frustrated about incomplete and lost health records, difficulty in communications among the extended healthcare team, and needless clinical errors and failure to implement best practice guidelines. Good information technology has the capacity to be transformational. I shall never forget the dramatic improvement to the quality of service to patients and staff that followed the introduction of the first x ray picture archiving system in the UK at Hammersmith Hospital.
As the leaflet makes clear, the summary care record will provide my healthcare team with quicker access to more reliable information that should help my treatment. If I go under a bus in Birmingham, the local accident and emergency department will be able to access my records in London to check whether I have any allergies and what drugs I am already taking—information that could be lifesaving.
The primary purpose of electronic patient records is to improve patient care. As a patient I expect the following: that my records will be accurate and that I can work with my carers to improve their accuracy; that they will be treated confidentially; that they will be shared between the members of the healthcare team that collectively look after me in primary care and in hospital; and that they will provide a basis for accountability for the quality of my health care. In addition I would hope that my records could be linked to “expert systems” that would minimise the chance of treatment errors and maximise the chance of my being prescribed the best treatment.
There is another huge potential benefit of a nationwide electronic patient record system, to improve treatment through research. Research provides the evidence that medical treatments work or, equally importantly, that they don’t. It is an integral part of the best health systems.
The foundation for much of this research is information contained in patient records. This information allows us to discover the factors that determine health and disease, to monitor the safety of drugs, and to study the effectiveness of treatments. Medical records can also be used to identify patients who might be suitable to take part in a clinical study, in order to invite them to take part.
Of course, medical records are both personal and sensitive, and everyone agrees there must be safeguards for confidentiality and consent. But the majority of the public is in favour of using anonymised records to facilitate research. A survey conducted by the Wellcome Trust last year asked 1179 people, “How willing or unwilling would you be to take part in a medical research project which involved allowing access to your personal health information, that is, your medical records, on an anonymous basis?”1 Seventy four per cent responded that they would be very or fairly willing. As a patient with cancer commented, giving her anonymous data for research is “the most painless way she can help others get better.”
But we cannot avoid the fact that sometimes researchers working as part of clinical teams will need to access data from which it may be possible, directly or indirectly, to identify a patient. For example, a study of 33 000 children showed that those who lived close to a power line at birth had an increased risk of leukaemia.2 This study involved information that a child of a particular age lived at a particular postcode. Together, these two pieces of information could lead to the identification of individual children, but it would not have been feasible—or proportionate—to seek individual consent from all 33 000 families.
In our 2008 review of data sharing, the former information commissioner, Richard Thomas, and I, set out specific recommendations to enable researchers to access this type of identifiable information for research purposes, while ensuring appropriate safeguards and sanctions are in place.3 The last government accepted these recommendations, but we have yet to see them introduced in the health arena. We must have action now to implement them.
The new coalition government, coupled with the economic crisis, means that the future is uncertain for Connecting for Health. I do not believe that Connecting for Health has been marketed well to either patients or the medical profession. There has been much too much about its use as a management tool and too little about its primary aim, which should be to improve care. It may be that it would be better implemented as a more federated programme, ensuring common standards to allow interoperability. A key aim must be integration of records and communication across primary and secondary care.
But one thing is certain—the best care requires the best medical records. A world class NHS demands a world class infrastructure. The future for medical records is digital.
Cite this as: BMJ 2010;340:c3022
Competing interests: The author has completed the unified competing interest form at www.icmje.org/coi_disclosure.pdf (available on request from him) and declares (1) no financial support for the submitted work from anyone other than their employer; (2) no financial relationships with commercial entities that might have an interest in the submitted work; (3) no spouses, partners, or children with relationships with commercial entities that might have an interest in the submitted work; and (4) The Wellcome Trust funds medical research, including clinical trials and research that may be dependent on clinical records.
Provenance and peer review: Commissioned; not externally peer reviewed.