|Home | About | Journals | Submit | Contact Us | Français|
Will private initiatives allowing patients to access their health records threaten the UK's national programme for IT, asks Michael Cross
A new private venture is offering NHS patients the chance to inspect their complete medical record, in electronic form, on any personal computer. Health eCard, being piloted in north London, is the latest of several initiatives which aim to give patients access to their medical records by using IT (information technology). Although the concept of electronic “patient held records” is not new, the technology seems to be coming of age—kindling debate on safety, confidentiality, the amount of information to which patients should routinely have access, and the potential impact on NHS resources.
Allowing patients to view their own records is one goal of the £12.4bn (€18bn; $24bn) national programme for IT in the National Health Service in England. However, initiatives led by general practitioners and commercial suppliers are moving more swiftly and allowing more comprehensive access than has been promised by the “official” system for access to records, which is due to go live later this year.
Although all parties agree that using IT to give patients access to their records is a good thing, there is fierce debate over several practical matters.1
One is whether records should be accessible over an online network (usually the internet) or stored in a portable medium in a form that can be displayed via personal computers. Health eCard takes the second option. Participating patients buy a smartcard that is similar to a credit card but is equipped with an adapter allowing it to be plugged into the USB (universal serial bus) socket found in most current models of personal computers.
Copies of records are downloaded from the general practice's system via a one-way connection box that the company provides free to GPs. The card stores the record in a structured form, with important information such as recent test results grouped together, says Health eCard's managing director, Jul Kornbluth. The record also contains images such as x rays. Kornbluth says the system is compatible with 80% of GP practice computers and the card can be read on virtually any personal computer by plugging it in and entering a password. Holders can also make a summary of emergency information, such as current medication and allergies, available without a password.
Smartcard records are in use in several countries and have been tried by the NHS in the past. In 1989, some 8000 patients living in the Exmouth area were issued with “Care Cards” containing records of care encounters and decisions, including prescriptions.2 Although the Exmouth scheme was a technical success, the NHS did not take the idea further.
When the NHS national programme for IT was conceived in 2002, policy makers almost immediately ruled out patient held cards in favour of online access for both NHS staff and patients. Later this year, if all goes well, some patients will be given access to summaries of their records as part of the process begun this spring of loading summaries of clinical information onto the central care records computer.3 Consenting patients at a handful of practices will be able to inspect their summaries in a secure section of an NHS website called Healthspace (www.healthspace.nhs.uk).
Some GPs are already going much further than the national scheme. Members of a collaborative of GPs using technology supplied by Emis (the company that has the largest share of the GP systems market in England) have already begun posting the complete records of volunteer patients on the internet. The Records Access Collaborative, led by Brian Fisher, a GP in London, is recruiting 100 practices to take part in a large scale pilot. One member, Amir Hannan of Thornley House medical centre in Hyde, Cheshire, says he is the first GP to offer all his patients the chance to have their records on the web.
Both approaches have advantages. Online records can be kept continuously up to date, can be integrated easily into NHS clinical systems, and do not depend on patients remembering to carry their cards. For portable records, the advantages are security—anyone gaining unauthorised access would need to have the card itself as well as the password—and the ability to store images as well as text.
Despite the differences in technology, the Record Access Collaborative and Health eCard teams agree on several key points. One is that patients should have access to the entire record and not just a summary. “It's all or nothing,” Kornbluth says. Another is the need for educating patients in such matters as picking a non-guessable password (Kornbluth says the biggest threat to the Health eCard may come from members of the patient's family, who might have almost unlimited opportunity to attempt to access the card by trial and error). Dr Hannan requires patients to watch an hour-long training video and fill in a four-page questionnaire to ensure they understand the issues at stake, including that of security.
Security measures for Healthspace have yet to be finalised, but they will probably involve patients enrolling at their GP surgery and receiving an electronic token to use in tandem with a password.
In the charged political climate surrounding NHS IT, both the Health eCard and the Records Access Collaborative emphasise that they see their roles as complementing the national programme, not competing with it.
NHS Connecting for Health, the agency running the national programme, is watching the initiatives with enthusiasm tinged with apprehension. The feeling is that although success at the grass roots may help build public support for electronic records, it would give ammunition to critics questioning the need for a national system, especially the central electronic care records “spine”. Failure, such as a high profile breach of confidentiality, could damage the credibility of all electronic records.
A report published in March by the Nuffield Trust points to several things that need to be understood before electronic personal health records become a mainstream part of NHS care.4 Electronic personal health records (ePHR) “have the potential to impact positively on the delivery of care [but] this will require careful attention to technical, organisational and human barriers, supported by further research to demonstrate objective benefits and contextual influences,” it concludes. Most patients will welcome access to ePHRs, but few will consult them regularly: “The most frequent users are likely to be patients with long term conditions (or their carers), who have the greatest need to track their illness and treatments and manage interactions with the health service, and those experiencing episodic periods of care that generate new information needs.”
Challenges identified by the report include how to integrate the patient held record into the process of care and how to manage the transfer of responsibility to patients.
Another uncertainty is over the funding of records access. Health eCard relies on patients being willing to spend £39.50 on the card (of which £10 goes to their GP: this is the usual fee charged for a copy of paper records). Membership of the Record Access Pilot is free, though the scheme is funded by a private company. If the scheme were to be extended nationally, funding would have to be found for educating and supporting patients. Another issue is equitable access—thanks to the “digital divide,” people with most need of NHS services are the least equipped to use IT. To reach people who do not have access to the internet, the Nuffield report says that records might be made available via mobile phone and digital TV as well as personal computer.
More research is also needed into the impact on doctors' time—patients “empowered” by access to information may be healthier and more compliant, needing fewer appointments. On the other hand, empowered patients may need longer sessions with their GPs.
The Nuffield report also points out that much of the evidence on such matters has been gathered in small scale pilots run by enthusiasts: “Although the lessons learned have been valuable and echo those of larger implementations in the US, the feasibility and benefits of widespread ePHR have yet to be demonstrated.” The biggest unknown is whether electronic personal health records improve patients' outcomes. On this, the Nuffield report cites “a lack of hard evidence . . . although formative research suggests improved perceptions of patient-centred care, empowerment for health self-management and the potential for improved data quality and medication compliance.”
Despite these reservations, there is a sense that, nearly 20 years after the 1990 Access to Health Records Act, the idea that patients should use their records is becoming the norm. Dr Hannan says he has so far judged only one patient unsuited to viewing his record—and that decision was reached jointly with the individual, who was receiving psychiatric care in the community.
On the technological mechanism, and key questions such as security, the jury is still out. Professor Mike Pringle, joint clinical lead for the NHS National Programme for IT, says that the ideal technology for patient access has yet to be developed. Both the Record Access Collaborative's approach and the Health eCard may be too demanding for most patients, he says, while the Healthspace summary record may not be comprehensive enough for the long term. “My best guess is we evolve somewhere halfway between the two. For those who want it, we should be enabling access to the whole record. But that may be wanted by relatively few patients, we don't know. The whole point is to try to find out.”