Cross Talk on empowering patients with electronic records
Michael Cross suggests that passionate arguments over how to make electronic health records available to the public are distracting attention from a more fundamental issue - the change such records will bring about in the relationship between doctors and patients.
Over the next few years, healthcare organisations are going to dispose of a lot of paper as they replace Lloyd George envelopes with electronic records. Here's an idea… When the great clear-out happens, why not invite each patient to collect their own paper record (subject to proper identification, of course) and do with it what they will.
The point is not to reduce the NHS's use of landfill, but to give ordinary patients some awareness of their records; for two reasons. First, when patients see what's involved in paper records, they are likely to be better disposed to their replacement with IT.
More importantly, handing over records now will prepare patients for a new world of access to their own healthcare information. Because of all the changes to healthcare enabled by information technology, allowing patients to routinely see - and contribute to - their own records may be the most profound.
"The case for portable records centres on security - anyone gaining unauthorised access would need to have the physical medium as well as a password - and the ability to store images as well as text."Yet the possibilities attract surprisingly little comment. This is likely to change as a culture spreads of involving patients more in their own care, and as more patients become aware of their rights.
The technology discussion
At the moment, most of the debate that is taking place seems to be over the technology that could be used to give access. The main contenders are dedicated kiosks, the open World Wide Web and portable media such as smart cards.
Supporters claim each of these has advantages. The case for online records is that they can be kept continuously up to date, can be integrated easily into clinical systems and don't depend on patients remembering to carry their cards.
The case for portable records centres on security - anyone gaining unauthorised access would need to have the physical medium as well as a password - and the ability to store images as well as text.
The doctor-patient relationship
However, the technology isn't the interesting question. Much more profound is what starts to happen to the relationship between doctor and patient when both have equal parts to play in creating the record. At the very least, there is no future for coded notes like the apocryphal "NFN" (normal for Norfolk).
A report by the Nuffield Trust points to several issues that need airing. These include how to integrate the patient-held record into the process of care and how to manage the transfer of responsibility to patients.
Another issue is equitable access: up to 40 per cent of Britons don't use the Internet and have no intention of trying. These tend to be the people with the most need of NHS services. To reach them, we may need to make records available by mobile phone or digital TV.
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 to discuss all the issues they may have with their care.
The Electronic Personal Health Records report also points out that much of the evidence on electronic records has been gathered in small-scale pilots run by enthusiasts: the feasibility and benefits on a larger scale "have yet to be demonstrated".
The biggest unknown is whether electronic personal health records improve patient 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."
It concludes that 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."
Despite these reservations, there is a sense that, more than 15 years after the 1990 Access to Health Records Act, the idea that patients should use their own records is becoming the norm. About time, too.
Further Reading
About the author: Michael Cross is a freelance journalist specialising in healthcare informatics and e-government. He is a member of the British Computer Society.