Put another record on

A couple of years ago, there was significant hype about IT putting patients “in charge” of their own health by giving them control of their health records.

The talk sounded strange, given that patients have been able to jot down appointments and other notes about their health since the invention of pen and paper. It wasn’t clear what using an online space, store, or vault was supposed to add.

So it doesn’t seem surprising that some of the early personal health record products have fallen by the wayside. Google announced earlier this summer that it was pulling the plug on Google Health, due to a lack of public demand.

The service was launched in 2008 and allowed users to input data from their own at home devices, simple food and exercise charts, or test results.

Announcing the service’s demise, a post on Google’s official blog said: “There has been adoption among certain groups of users like tech-savvy patients and their caregivers, and more recently fitness and wellness enthusiasts.

“But we haven’t found a way to translate that limited usage into widespread adoption in the daily health routines of millions of people.”

Tied in, tied down

Yet personal health records are working for some people with a specific use for them. For example, the Ki Fit unit produced by company Ki Performance has an online subscription service that allows people to purchase the package with an armband to monitor activity and sleep.

The information is then loaded onto an online PHR, which users can use track their health and progress. It’s mainly intended for the growing number of people aiming to lose weight and mirrors similar online services, such as those offered by Jenny Craig and Weight Watchers.

Those looking to get seriously fit are another big market, with a number of companies offering services similar to the Nike+ running tracker.

On the medical front, Peter Singleton, director of Cambridge Health Informatics and principal research fellow at University College London, says that for a PHR to be successful, it needs to provide a link between patients and their clinicians.

In the US, this has led to the development of the ‘integrated’ PHR model – where users can enter data and share it with their clinician, and vice-versa – and the ‘tethered’ model – in which a PHR is linked to a particular institution of service.

Examples include My HealtheVet for war veterans. Users can input their personal information, activity and order medication. Clinicians are also able to access the account with approval from users.

In the civilian world, the Kaiser Permanente My Health Manager allows users to e-mail physicians, order prescriptions, view test results and make appointments, as well as view their records. And the Cleveland Clinic offers My Chart, where users can also book appointments and see lab results from the clinic when they are available.

Professor Don Detmer from the department of health sciences at the University of Virginia told eHealth Insider in an email these models are a “real breakthrough” and could turn out to be the “killer application” like Google’s role in the search engine world.

“Clearly, with ageing populations plus more chronic illness [and] more sophisticated care regimens for cancer and so on, having this kind of way to keep the patient at the centre of their care is very exciting.”

UK pioneers

Examples also exist in the UK, although they are still largely at an experimental level. For instance, 12 liver patients at Queen Elizabeth Hospital Birmingham have been trialling an online record that enables them to view documents about their care such as past and future appointments, medications, diagnosis and test results.

South London and Maudsley NHS Foundation Trust has announced that it will be using Microsoft’s HealthVault personal record technology to give users “control” over their care plan and other information to encourage a “dialog” with the clinicians they are working with.

Detmer says it is chronically ill patients who will, eventually, receive the most benefit from PHRs. “The electronic personal health record integrated into the electronic health record [that which the clinician controls] has particular utility for patients with chronic illnesses so that they can truly be full partners in their care and both see the progress along with their caregivers.”

He feels the probability of healthy young people being attracted to such a record is unlikely. However, Dr Claudia Pagliari, senior lecturer in primary care at the University of Edinburgh, says it is likely to happen in the future. “It’s an evolving beast – it will come with time. But it’s not going to be something that everybody has.”

What next for HealthSpace?

The NHS has tried to create its own, universal PHR, HealthSpace, which started off as an organiser, became the vehicle for patients to view their Summary Care Record, and is still supposed to acquire further functionality, building on the GP ‘communicator’.

UCL’s independent evaluation of the wider SCR project last year found it difficult to make any positive conclusions of HealthSpace’s impact, because so few people in the SCR pilot sites were using it.

Lead researcher Trisha Greenhalgh believes “everything” was wrong with the technology and the Department of Health should stop funding the project.

“It shows a bit of a lack of courage from NHS Connecting for Health that it can’t actually look squarely at something that hasn’t taken off and say ‘well that didn’t work did it? Let’s stop pouring money into it’ – they kind of just left it hanging.”

Singleton notes that to get access to the SCR, patients have to be in one of the four early adopter areas, and go through “reasonable amount of rigmarole” put in place because of security concerns. And even then “you can only look at [the SCR], you can’t interact with it.”

A DH spokesperson told eHealth Insider only 25 users are accessing their SCR each month at the moment, which is down on the 60 recorded earlier this year, because of the “limited functionality and a lengthy registration process.”

Even so, she said: “The business case to enhance HealthSpace is under review in the context of efforts across government to make it easier for patients and citizens to easily and securely access services that meet their needs.”

Given the evidence that it is ‘integrated’ and ‘tethered’ PHRs that work, it is perhaps surprising that the government has chosen this month to once again promise that patients will be given online access to their medical records.

The Cabinet Office’s data transparency consultation says the intention is to give people access to their medical records “so that they can manage their health better and make more informed decisions with their clinician.”

Culture change needed

Professor Greenhalgh says that for PHRs to have a real impact, a culture shift is needed. She says the UK has always had a ‘paternalistic’ healthcare system in which patients have had their health – and their healthcare information - looked after for them.

Changing this culture will not happen miraculously through the invention of nifty software. Instead, Professor Greenhalgh says clinicians need to make a move, and encourage people to care about having information to hand.

But Detmer notes that many clinicians are sceptical about the value of PHRs, particularly when it comes to patients entering information.

“Most patients are not so committed that they will keep the data up to date, physicians are wary that the patient may have changed the data so that they are reluctant to believe it as reliable for certain,” he says.

“Basically, I’m sceptical that free standing PHRs will work as a major model while the integrated versions are growing daily.”

The impact of giving patients access to data, health records, and feedback about NHS services will be one of the themes at EHI Live 2011, for which booking is now open.

The two-day conference and exhibition at the NEC in Birmingham in November will include a keynote speech from Tim Kelsey, the government’s ‘transparency’ tsar and a practical session from Dr Amir Hannan for GPs and practice staff committed to giving patients access to their medical records.