The Cabinet Office is reviewing the future of all large IT projects - so it's unclear why the Healthspace project is continuing.
Today's independent report on Healthspace - a government-run personal health record scheme - finds that few patients want to use the system. Beyond the original business plans that predicted that millions of people would use Healthspace, the evidence for years has been that few patients would take any notice of it.
The report says:
"Policymakers’ hopes that HealthSpace would lead to personalised care, lower NHS costs, better data quality, improved health literacy, and greater empowerment were not realised, not least because the technology was not adopted to a major extent..."
The researchers found that one Healthspace user preferred an iPhone app - a digital personal organiser - to Healthspace. The user said the iPhone app was more fit for purpose.
The findings of the report by a team of independent researchers led by the redoubtable Professor Trisha Greenhalgh will suggest to some that Healthspace has been a project that was initiated with the best of intentions but has become a project undertaken more for the benefit of its project participants - IT consultants, suppliers and managers - than patients.
Does this help to explain why a project that has clearly failed, has been known for years to have been failing, and which shows no hope of succeeding, is continuing?
The report says of early strategy documents:
"Patients were depicted as passive recipients of HealthSpace’s benefits rather than as active agents who have opinions, feelings, relationships, and values, which may explain why these human factors were not identified as mission critical to the programme’s success.
"Risk was assessed by a highly formalised process in which quantitative scores were assigned to policymakers’ subjective evaluations of different risks and summed to give an overall risk score.
"This may have lent a spurious objectivity to estimates of success and diverted attention from systematic qualitative methods such as defending the ideas and plans in front of an audience."
Some other highlights of the Greenhalgh report (the sub-headings in bold are mine):
"In retrospect, the notion of HealthSpace as a “data container” to be “deployed” rather than as a component of a socio-technical network (and hence as an opportunity for socio-technical change) was a serious flaw in the original concept."
Was Healthspace inflexible compared with open source and private sector products?
"Compared with private sector or open source products, HealthSpace also has limited potential for agile redesign in response to user feedback, since content and functionality is controlled by the state and software upgrades occur slowly and infrequently."
Why was Healthspace given the go-ahead?
"The HealthSpace programme seems to have lacked several critical success factors, which begs the question of why these were not identified at the outset, especially since a lengthy official risk assessment was undertaken. One reason appears to be the technical and managerial focus of early strategy documents."
iPhone app better than Healthspace?
"One participant who had tried HealthSpace, later became interested in downloads for a digital personal organiser (iPhone apps) and found these more fit for purpose than HealthSpace. This participant later emailed us (unsolicited) a structured table of blood glucose readings over time, generated using a digital application costing around £5, and commented that this simple task would not have been possible using HealthSpace."
Personal health records are a good idea in theory
"Patients’ involvement in their care is viewed by some as both inherently desirable (empowering) and potentially cost saving. The vision for informed, self managing patients as active partners in healthcare represents a major cultural shift from the paternalistic, disease focused models of the past.
"Personal electronic health records, managed by patients and interfacing with clinician held records, are seen as having a key role in the new care model, by facilitating storage and exchange of information, promoting engagement with self management, and supporting continuity of care, although they raise practical, ethical, legal, clinical, technical, cultural, and financial challenges..."
Is Healthspace needed when there is GoogleHealth and Microsoft's Healthvault?
"Microsoft and Google each recently launched a personal electronic health record (HealthVault and Google Health, respectively), raising questions about how people’s use of such records might occur independently of a professionally led clinical care package."
Abortive work on Healthspace
"By the time we evaluated the preliminary version of the technology in 2008, a business plan for HealthSpace Extension had been submitted. This proposed a more sophisticated product with greater functionality and more extensive links to other parts of the National Programme for IT, for example, booking of appointments, requests for repeat prescriptions, and a secure email link. However, the full functionality of HealthSpace Extension was never developed."
More wasted work?
"At any time in the evaluation, multiple versions of it [Healthspace] existed—including the version that people were actually using, the version that had been approved and was undergoing technical development and limited piloting, and one or more versions that were at the design stage."
And it’s still being developed
"We were advised that a further upgrade with extended functionality, still to be finalised at the time of writing, was planned for late 2010. We understand this is likely to include a facility to order repeat prescriptions online and a fully online registration process."
Researchers struggled to find people who were using Healthspace
"Although we had originally planned to study people who had spontaneously signed up for HealthSpace, our final sample comprised people who consented to try this technology as part of a research project."
Upbeat strategy documents not matched by reality
"... Policy documents published in 2005-8 were written in a hopeful, upbeat style ..."
Was Healthspace geared more to its project participants than patients?
"Strategy documents portrayed implementation of the HealthSpace programme in overtly technical and managerial terms (“technology development”, “procurement”, “deployment”).
The main active agents in such documents were the Department of Health, Connecting for Health, software suppliers, policy itself (“policy envisages . . . ,” “policy drivers”), and the HealthSpace technology which would “deliver benefits”... The main experts identified in strategy documents were software developers and national implementation leads; neither clinical nor patient expertise was mentioned."
Healthspace continued even after internal interest waned
"Early policy enthusiasm for HealthSpace seemed to wane after experiences in 2007-8. The business case submitted in 2008 for introducing extended functionality was not approved by the Department of Health because, according to senior policymakers interviewed for this study, it was considered too high risk, although we were not told why.
"A business case for a scaled-down version of the programme (not supplied to us but which we understand cost £18m compared with an original £98m) was given one year’s approval from January 2010 from the “Darzi” funding stream, which lay outside the National Programme for IT and was oriented to supporting self management of long term conditions."
Benefits unattainable if system goes largely unused
"Project leads from participating NHS organisations repeatedly raised concerns with Connecting for Health in monthly management meetings about the low uptake of advanced HealthSpace accounts, since the benefits predicted, such as lower NHS costs and patient driven improvements to data quality, could not possibly be achieved unless the technology was used."
Healthspace "faffy" - online self-help groups are more useful
"One participant showed us an online self help group hosted by a charity for patients with diabetes, in which patients and carers exchanged informal stories and tips on topics such as insulin dosing, handling small children with diabetes, and negotiating with health professionals to get the tests and interventions recommended in guidelines...
"HealthSpace with its complex registration procedure, password controlled access, and self completion data fields was described as “faffy” or (more commonly) not considered at all."