Personal electronic health records: MySpace or HealthSpace?
Authors: Michael R Kidd
Journal: BMJ (2008)

The NHS, through Connecting for Health, is introducing two types of online health record for everybody in England—the summary care record and HealthSpace.1 2 The summary care record is being introduced in five “early adopter” pilot sites. An independent evaluation of this implementation was released this week.3 Delays in deployment, with summary care records in only two sites to date, mean that the evaluation cannot provide the concrete answers that many people were hoping to see regarding consent, patient acceptance, and clinical benefits.

The summary care record is a centrally stored summary of health information created initially from general practitioner records. It contains information on current medications, adverse reactions, and allergies. Proponents of the summary care record expect to see improved patient safety, with reductions in preventable errors, improved access to vital information, and better informed patients.1

HealthSpace is a separate initiative that allows patients to record selected data in their own internet based health record, with control over how they share this record with healthcare providers.2

The implementation of personal health records by the NHS has been closely scrutinised. Reports by a ministerial taskforce in 2006 and the House of Commons Health Committee in 2007 raised concerns, including “dismay” at the unclear arrangements for the summary care record and the need for “easy to use” products.4 5 HealthSpace is voluntary and people opt-in to create their own record, but people must actively opt-out if they do not wish to have a summary care record. This consent model has been criticised, with the BMA stating that explicit consent should be obtained.6 Past commentators have raised the need to select the right patient consent model for the implementation of electronic health initiatives.7

The evaluation reported that the current level of development of the summary care record means that it is not yet readily “trialable.” NHS staff reported “clunky” technology, which interfaces poorly with other electronic health systems. HealthSpace is even less well developed, with users reporting frustration with the technical processes of registration and use. While the level of development affects the evaluation and the wider applicability of its findings, the reasons for delayed implementation highlight factors that will affect its eventual national roll-out.

By the end of March 2008, only 153 188 summary care records had been created for patients attending general practices in the first two pilot sites. In four sites, 614 052 patients had been sent a letter informing them about the program and their ability to opt-out or to restrict access. Only 0.76% actively opted out of having a summary care record and 0.03% requested restricted access. Uptake of HealthSpace was very low, with only 0.12% of those invited to open an account completing the process.3

Consistent with previous reports supporting the potential of electronic personal health records,8 most NHS staff and patients saw the summary care record as “a good thing” with potential for improving efficiency of care and patient safety. Some participating general practitioners expressed concerns about the ethics and legality of creating a record for a patient who has not given full informed consent and the extra workload in uploading patient’s details into the summary care record.

The evaluation reported the positive impact of “national clinical leads” and local champion general practitioners and practice managers in encouraging participation by their peers. It also stressed the importance of facilitators visiting practices to provide training and support on the implementation of summary care records. Elements that contributed towards success in pilot sites included strong leadership and past success in implementation of electronic health systems, and differences between the two successful early adopters and other sites might be so great that their experiences may not translate well to other settings.

Despite media reports that the summary care record risks civil liberties, many patients said they were “not bothered” whether they had one or not but would welcome ways to remember details of their medical history and current drugs. Many patients did not recall receiving any information about the summary care record or HealthSpace, despite extensive public information campaigns. Patients with potentially stigmatising conditions were more positive about the summary care record than expected. Although most people wanted to have a summary care record, they wanted to control who could access it, and most people were not interested in recording their own medical details on HealthSpace.

The evaluation identified the risk of creating a “credibility gap” if patients see mistakes, either real or perceived, in their summary care record. As more information is added to the record, the scope for errors increases, as does the risk of a credibility gap. “If data do not accurately reflect the patient’s real record . . . this may affect the patient’s level of trust in the competence of their clinicians.”3

But perhaps this whole development by the NHS is all too little, too late. Is the NHS summary care record a 20th century healthcare solution being overtaken by 21st century technology and increased sophistication in the use of the internet in the community? Will the people of England be content to participate in government funded initiatives like HealthSpace or will they decide to take more direct control of their own personal health information? Will the locus of control over personal health information shift from health services and governments into the hands of individual patients supported by private internet based organisations?

For example Microsoft’s HealthVault and Google Health are personally controlled health record products already available to some patients in the United States.9 10 11 12 Social networking sites, like Facebook and MySpace, offer alternative ways of storing and sharing personal information, including health details, and are being used by some people in ways that should alarm advocates of privacy. Future technology may allow patients to store their full genetic profile on a website and provide access not only to chosen healthcare providers, but also to commercial organisations and private researchers.

Given the choice of having governments create and exert a degree of control over your internet based personal health record, and being able to do it yourself with a little help from Microsoft or Google, which would you choose?