Why health records portal HealthSpace faces renewed criticism...At a time when public sector funding cuts will put an estimated 50,000-plus NHS jobs at risk of redundancy, should the Department of Health really be subsidising its online HealthSpace service for so few users? Nick Heath reports.
After three years and £8m of investment, fewer than 3,000 people are using the NHS web portal and organiser HealthSpace to view their medical records.
Of the few people who use HealthSpace, an independent study by UCL last year found that "all participants were disappointed at the limited content" - a finding that might explain why only 673 have ever used the portal to view their records.
And the outlook for HealthSpace is not improving, as growth in the number of patients registering to view records through the portal is tailing off. About 750 new patients completed the registration process between March 2010 and February 2011, down from more than 2,000 people in the previous two years.
Yet the Department of Health continues to pump money into supporting HealthSpace, at a time when NHS trusts are preparing to axe more than 50,000 jobs because of budget cuts.
Who uses HealthSpace?
HealthSpace users are split into two types - basic and advanced. Basic users have access to an appointments calendar and address book, can store details of their health and lifestyle - such as weight - and plot them on graphs, and access a health reference library.
Advanced users can use HealthSpace to access Summary Care Records (SCR) - a cut-back version of a patient's medical record containing details of their medications and allergies - provided that SCRs are available in their area and their local Primary Care Trust (PCT) has made them available through HealthSpace.
The need to take an ID document to a local NHS office to register for an advanced account appears to be putting people off using HealthSpace to view SCRs. Of the 12,311 people who began the registration process, only 2,971 have completed it. Another factor is that only 10 out of 151 PCTs in England have chosen to make SCRs available through HealthSpace.
And even with the 170,000-plus basic HealthSpace users, it looks unlikely that the DoH will ever hit its own forecast: that 10 per cent of the adult population will use the service within five years of its launch.
After patients start using HealthSpace, it seems they don't feel the basic and advanced account services provide them with the information and services they need, or that weren't already available.
Last year's study by UCL found no evidence that HealthSpace had increased personalisation of healthcare or reduced NHS costs.
Researchers found that some patients "were shocked and angry" at the scarcity of useful information available through HealthSpace, had trouble registering and using the site, and preferred to use iPhone apps, spreadsheets and word processors - or even pen and paper - to capture their medical info.
Yet the DoH seems blind to the project's failings, shrugging off the report's findings by saying it provided an "historical snapshot".
The private alternative
It's not as if the public sector has to provide a service that isn't being met - Microsoft launched its HealthVault portal in the UK last year and a number of GPs offer patients online access to medical records via the Emis medical record viewer.
Speaking in 2009, David Cameron praised commercial healthcare services such as Google Health and Microsoft HealthVault as an alternative to NHS HealthSpace, saying: "Best of all in this age of austerity, a web-based version of the government's bureaucratic scheme... costs virtually nothing to run".
The pledge even found its way into the Conservative draft health manifesto, which said: "We will put patients...
...in charge of their own health records, with the ability to choose which providers they share them with".
Yet under the coalition government, the DoH has not detailed how it will make patient records available through other providers - preferring instead to stick with supporting HealthSpace.
An outline business case for improving HealthSpace is in the process of being approved and a DoH spokeswoman said providing a "secure patient portal that enables access to the Summary Care Record" was "fundamental to transforming patient control and choice about their health".
She said that patients would be able to access their medical records through a non-NHS portal in future, and hinted that HealthSpace's long-term survival may not be guaranteed.
"We expect a market to develop, and in the meantime, HealthSpace will continue to provide patients with direct access to their SCR," she said, refusing to provide further details.
She added that the DoH was liaising with information providers on how they could provide patients with access to their records, as part of a consultation on the future information strategy of the NHS.
"We expect many suppliers to offer patient's tools to manage their records and we intend to use this consultation to engage with potential information providers and intermediaries. It will be up to patients to choose where to put their information," she said.
Trisha Greenhalgh, professor of primary healthcare and director of the healthcare innovation and policy unit at Barts and the London School of Medicine and Dentistry, led last year's independent study into HealthSpace.
She feels its problems can't be fixed with a plaster and a shot of new features, and that fundamental design flaws mean termination is the only answer.
Greenhalgh said: "HealthSpace was designed by someone in a laboratory who had not been out there and looked at how patients managed their illnesses.
"It was the most unpopular tech I have ever known in my life; we couldn't find anyone who liked it, as people couldn't fit it in with their daily lives or the way they managed their health.
"It's a scandal that nobody has taken a hard look at HealthSpace and said why are we still pouring money into it."
As an example of HealthSpace's poor usability, Greenhalgh cited HealthSpace's calendar for logging health appointments, raising the question of why patients would want a separate calendar that requires users to log in every time they want to use it.
"People want to put these things in the diary on their phone or calendar on the kitchen wall - to integrate it with the rest of their life. To think that people will log in to HealthSpace every time they want to update their calendar is crazy," she said.
Greenhalgh also questioned the way the service kept people's health data, such as their blood glucose or cholesterol levels, walled off from family members or clinicians.
"Managing a chronic illness is very much about sharing these details with those people who support you - whether it is a family member, friend or health professional," she said.
The third way
The answer, in Greenhalgh's view, is to let the charities and patients' groups - the people with everyday experience of what it means to suffer a condition - produce the systems that capture, store and provide information to help with patient healthcare, and provide the service that HealthSpace is designed to offer.
"The answer may lie in the third sector who will design technologies and approaches," she said.
With every illness, different information needs to be captured and different networks of clinicians, family and friends are needed to support the patient - a need Greenhalgh said is not well served by a large centralised system provided by the NHS.
"[The needs are] going to be very different for different people. We need a bazaar - lots of different providers offering different things and people choose what suits them - rather than a cathedral, a big monolithic product," she said.
It sounds like a perfect argument for Cameron's Big Society - but so far HealthSpace has proved to be one of Labour's White Elephants that the coalition doesn't want to let go of.