Patients have found the government’s personal health record project HealthSpace neither useful nor easy to use and only a tiny percentage have so far signed up for it, according to a study published today.
Researchers led by Professor Trisha Greenhalgh from Barts and the London School of Medicine and Dentistry reported that just 0.13% of those offered the chance to open an advanced HealthSpace account had done s.
They also found that functionality was poorly aligned with patient expectations. The study said patients were disappointed with the amount and type of data available, the need to enter data themselves, and the limited options for sharing this data with their clinician.
A paper in the BMJ shows that between 2007 and October 2010 172,950 people had opened a basic HealthSpace account and 2,913 patients – 0.13% of those invited – opened an advanced account which would allow them access to their Summary Care Record.
The researchers said the take up was in stark contrast to the Department of Health’s prediction in its original business case that 5-10% of the population would open an advanced account.
They added that the policymakers’ hope that HealthSpace would lead to empowered patients, personalised care lower NHS costs, better data quality and improved health literacy “were not realised over the three year evaluation period.”
In response the Department of Health told EHI Primary Care that the research had produced “a historical snapshot rather than insight into patients’ needs and expectations.”
The DH said it was continuing to develop HealthSpace to meet patients’ aspirations and to give patients access to their SCR.
In the paper, Professor Greenhalgh and her team said the risk that personal electronic health records would be abandoned or not adopted was “substantial” unless they were closely aligned with people’s attitudes, self management practices, identified information needs and the wider care package including organisational routines and incentives for clinicians.
The researchers found that patients who had a basic HealthSpace account were disappointed and even angry when they discovered an “empty” record and realised that they would have to enter the data themselves. Those with a chronic illness did not see the basic HealthSpace account as adding value in managing their condition.
One patient commented: “I don’t know why you would document it here, because there’s no one looking at it, there’s only you looking at it…”
Such was the poor response to HealthSpace that the research team failed to recruit anybody who was using the advanced HealthSpace account to access their Summary Care record.
Out of a subset of 20 people with diabetes who were recruited to try out HealthSpace only three agreed to use it and all of them abandoned it after first accessing it and declared that they were not interested in using it again.
Three practices took part in a trial of HealthSpace’s Communicator function which offered a secure message exchange function for patients and clinicians. However, out of a possible 30,000 recruits only 100 patients signed up for the service and 15 agreed to be involved in the research project.
Those who took part found the Communicator functionality easy to use and saw the tool as offering continuity of care with a GP but the researchers said that rather than increasing patients’ autonomy , some seemed to use it to become more dependent on their GP.
The low use of HealthSpace in the UK contrasted with the use of personal health record systems in the US, the researchers said.
They highlighted the use by the US health maintenance organization Kaiser Permanente of its ‘My Health Manager’ portal which enables patients to access parts of their centrally held record including laboratory results, medications, past clinic visits and key diagnoses.
The researchers reported that by mid-2008 2.4m of Kaiser’s 8.7m members had registered to use the service, most commonly for repeat prescriptions and that most reported the technology was useful and easy to use.
The researchers said clinicians working for Kaiser were also paid for an encounter whether it occurred face to face or through an email while the UK does not specifically incentivise email consultation.
Professor Greenhalgh and her team said that an upgrade to the functionality of HealthSpace had been planned for late 2010 including a facility to order repeat prescriptions online and a fully online registration process.
However the paper highlights the project’s failure to attract support after early enthusiasm.
The researchers confirmed that, as revealed by EHI Primary Care, a business case worth approximately £98m, for extending functionality was not approved by the Department of Health in 2009 because “it was considered too high risk.”
It said that subsequently a scaled down business case coasting £18m was given one year’s funding from January 2010 from the Darzi funding stream.
The DH told EHI Primary Care that it was continuing to develop HealthSpace including improving the registration process for an advanced account.
In its full statement on the Greenhalgh report, a DH spokesperson stated: "As set out in the July 2010 white paper and expanded on within the current Information Revolution consultation, the aim is that patients and service users will be increasingly active participants in their care and will share decision making with their clinicians.
"HealthSpace gives patients’ access to their Summary Care Record online and enables secure communication between clinicians and patients.
"Our own research, conducted during 2009, showed that patients were keen to have access to their medical records as well as wanting medical updates and test results to be available online.
"The UCL research has produced a historical snapshot, rather than insight into patients’ needs and expectations. HealthSpace continues to be developed in response to those aspirations and the commitment to give patients, as well as clinicians, access to their Summary Care Record."