The report found that just over half the general public (53%) and a slightly smaller percentage of patients (46%) thought that identifiable data should never be used for research purposes without consent while only about one in ten researchers (11%) thought this.

There’s something about survey results that makes it seem as though opinions are just ‘out there’ in people’s minds, ready to be found out. This is surely even less the case with Electronic Patient Records than with topics like attitude to immigration or Labour vs. Conservative. Most people don’t even know what an Electronic Patient Record is, let alone have any idea what they think about them or how they should work.

The Department of Health clearly recognized this, and went to great lengths to provide information for their survey respondents. The survey includes 23 questions, but the word count is an impressive 6,000, most of which is providing background information to each question, told through the story of their imaginary patient Pam.

I sympathise with the Department of Health. It’s not easy to get peoples’ informed opinions. But neither is it easy to take in 6,000 words of information about a new topic, even if you have the time (or inclination) to read it. Which is why (and you may have seen this coming if you’ve already been to our Get Involved page) we’ve designed our Democs discussion game, in which very short gobbets of information are presented on information cards which are shared and discussed.

And factual information isn’t the only thing people need. Even more importantly I’d want to know the issues involved for different people. Pam (the Department of Health’s imaginary patient) has diabetes and her use of medical records will of course be influenced by that. But what about someone with very private sexual health information on their record? Or someone who has a rare disease which desperately needs other peoples’ records in order to find a cure? In order to give my opinion on how the system should work for everyone, I need to a chance to think about the perspectives of other people. And it’s hard to do this by yourself.

Let’s go back to the Department of Health’s results for a moment. Over half of patients want to be asked before their identifiable records are used, while only 11% of researchers think they should be. With more discussion and more opportunity to examine different perspectives, it will be interesting to see whether the results of our Who Sees What? project will differ.

The Department of Health has reacted to the feedback they’ve gathered. Recognising the value patients put on consent, they’re just launching a series of pilots on how best to manage the consent system. This suggests that people’s input can change things. So it’s never been more important to get that process right.

At the moment, nothing concrete has been decided, but on Wednesday the Chancellor is expected to publish more details in his Pre-Budget Report.

The NHS IT project is certainly an easy target. The project is estimated to cost £12.7 billion pounds – a number that is so large, it’s basically impossible to comprehend. But as we mentioned earlier this year when the Tories suggested cutting the scheme, it’s not clear that this is the money-saving trick it appears to be. An estimated £400m of public money has already been spent on the project, and one of the contractors, Fujitsu, is apparently owed a further £800m in payments. Cancelling the project at this point might not create immediate savings.

And Darling’s proposals might be a false economy in a more general sense. In November, NESTA (the National Endowment for Science Technology and the Arts) came out with an interesting report on the future of healthcare in the UK. They recognised that the NHS needs to save 15-20 billion over the next few years, and that they need to do this in the context of an ageing population in which two fifths of adults say they live with a long-term health problem. Cuts won’t do it, they argue. Something big needs to change.

The NHS was originally designed to deal with short-term, infectious illness. The biggest challenges facing the NHS today, however are long-term, preventative diseases such as cancer, cardio-vascular disease and diabetes. In order to tackle these conditions, the NHS needs to adapt to focusing on behaviour change, prevention and self-management. And this, NESTA argues, can only be done by giving patients control and responsibility over their own health.

HealthSpace seemed an important first step in the right direction. By giving patients access to their records online, patients could monitor their own health conditions and be less reliant on constant visits to health professionals. HealthSpace is also an important step in the development of telehealth, which can decrease the amount of time spent in hospital beds – a significant cost to the NHS.

HealthSpace was one of the first casualties of the NHS IT project, and was shelved back in June. Yesterday’s announcement, however, suggests there’s even less hope of getting it back on track. It seems that Darling’s plans may be a case of short-term cuts at the expense of a more long-term sustainable decrease in NHS spending.

One of the reasons HealthSpace was shelved back in June was the low take-up of patients who chose to access their record in the pilot areas. But Dr Braunold, directional head of HealthSpace, argues:

“Very few patients keep going back if all you can do is just look at your record. It’s like having an online bank account and not being able to do anything with it.”

She is determined to make patient access a central plank of the NHS IT project and hopes patients will be able to order a prescription, make an appointment and view additional information about an illness.

And her faith in the value of a centralised NHS system seems to be mirrored by a survey by E-Health Insider which is being published at just the same time. It shows that 90% of their readers would rather their records were accessible through HealthSpace than through companies like Google or Microsoft, as the Tories have proposed.

The green light has not yet been given, however, and this latest instalment of the HealthSpace drama still leaves lots of questions begging. The future does at least look a little brighter for giving patients the access and information they need to take more control of their own healthcare.

Well, that research is now being carried out and you can fill out this 5-minute online survey on what services you would find most useful. The results may be crucial to whether the NHS IT project will do anything to increase patients’ control over their own care.

Although this is currently just a suggestion from the opposition, handing data over to a private web provider raises a whole new set of questions – ones which we will no doubt need to face as healthcare becomes increasingly electronic.

Taking the records system outside the NHS could be a way for patients to gain increased control over their own records. Unlike the NHS’s proposed HealthSpace, patients on Google and Microsoft can not only view and comment on their health records but also add to them, delete them or change them. While this will no doubt infuriate various healthcare professionals, it would give patients greater ownership over their healthcare – one of the aims of the IT programme.

But it would also re-cast previous debates about privacy and security. These companies make their money from advertising. John Caulthard of Microsoft argues that sharing patient data with companies could be ethical and beneficial, allowing the NHS to target those with potential health problems. But could we also see nightmare scenarios where those with a history of anorexia were targeted by beauty experts, or by dieting pills? And would Google staff be added to the list of hospital staff, clinicians and GPs secretaries who can get access to our records? Regardless of privacy policies, such a system would have greater security risks with data moving between the NHS and private providers. Privacy advocates have long been critical of the amount of data which Google accumulates on its users – search histories, emails, documents and much more – but the storage of health data would be far more significant.

Like so many questions at Who Sees What? this one comes down to who the public trusts more with their personal information. At present, the answer is far from clear.

Telehealth lets patients measure vital signs such as blood sugar levels or blood pressure from home and submit it to professionals electronically. This, it is hoped, will allow patients with long-term illnesses to avoid endless tests and visits to hospitals. For example, a diabetic patient could simply prick his finger and hold it onto a test strip. His doctor, on the other side of the city, can then check that the dosage is correct and intervene if necessary. Although the NHS is beginning with the monitoring of vital signs, the potential for telehealth’s effect on the way that we get healthcare is staggering. ‘Real Time’ telehealth could include examinations and consultations through video conferencing or teleradiology, which allows x-rays to be conducted remotely.

Telecare, however, although it is often used by those with healthcare problems, is part of social care, rather than healthcare.It is provided by social service departments, rather than the NHS. It is essentially an emergency service, including push button alarms, flood sensors and smoke detectors. Telecare supports elderly or frail people to remain independent in their own homes safely

While allowing chronically ill people to manage their own health, and elderly people to remain in their own homes is generally thought to be a good thing, this is not the main impetus behind telehealth and telecare. They are responses to the huge costs of caring for a growing and ageing population.

Although these techniques seem promising, it’s vital to gather evidence on how effective they are and the best way to use them. Last July, the Department of Health launched the Whole System Demonstrator programme.

This is a study to test whether telehealth and telecare reduce hospital admissions, lengths of stay, and doctors’ workloads. The program is running a trial with 6,000 people with long-term illnesses in the boroughs Kent and Cornwall and Newham, East London to test the cost effectiveness of telehealth and telecare.

The Department of health has been very quiet on how these initiatives relate to the NHS’ wider IT development, particularly Electronic Patient Records. Telehealth is clearly another move to storing patient information in electronic form, but little has been said on how or where this information would be stored if telehealth and telecare were adopted more widely. As Smarthhealthcare.com reports, before the WSD programme it was ‘difficult for stakeholders, ranging from local authorities to primary care trusts, ambulance services, police and mental health bodies, to share information due to data protection issues.’

For privacy campaigners the project’s emphasis on an ‘integrated networks’ needed to provide ‘integrated care’ might ring alarm bells. Although sharing potentially highly sensitive information between organizations about patients who require a range of social and health care is nothing new, doing so electronically is new in many cases. It remains to be seen how this information will be integrated into NHS databases and its implications for patient privacy.

Currently, HealthSpace allows patients to book appointments and record health information. Patients in pilot areas can also view the basic medical information held on their Summary Care Records (SCRs). But the Department of Health had much bigger plans for HealthSpace in the long-term. It was hoped that it would give patients more control and ownership over their medical care, allowing them to read through doctors’ notes after a consultation, order repeat prescriptions, add to their SCR, check for accuracy and upload tests and measurements to aid the management of long-term conditions.

However, the programme has been severely delayed and only a tiny number of patients have accessed the services offered by HealthSpace – just 812 from a possible 250,000. In an unexpected announcement the Department of Health has said it is reviewing the value of HealthSpace to patients, and has halted the work in its tracks.

If the service stops at only allowing patients to view their SCRs, its value certainly is questionable. The Summary Care Record contains only basic information so it’s unlikely to be of particular interest to patients. For patients with chronic conditions like diabetes who do need to keep track of their health, the SCR will be of little use. The meat of GPs’ and hospital records remains firmly locked up in local systems.

In fact it’s not yet clear how many patients want access to their health information online at all. While a few GPs who’ve experimented with giving patients full access report real interest there’s yet to be a systematic evaluation of this type of system. In this context, the suggestion from University College, London of focusing on providing an tailored system for a limited number of patients carrying out self-care for chronic conditions, seems a reasonable next step.

Dr Neil Bacon and others argue that there is strong patient demand for access to medical records, but that the solution must be innovative and entrepreneurial, and should come from ‘trusted brand names,’ not the government. But it seems (thankfully) unlikely that Google or Microsoft will be given access to the NHS records systems so any commercial system will struggle to join up with existing systems of patient care. In the absence of an NHS-wide system, however, it may be up to private companies to deliver what they can.

The Charm Project, which is beiing run by a coalition of British universities, will be using technology to help people control the amount of exercise they do. Participants will carry devices which monitor how much exercise they are doing and let them know how they compare to the average. The project is based on the fashionable concept of ‘nudges’ which has been developed by American academics Richard Thaler and Cass Sunstein. They say that people can be led to good behaviour by systems which make the right choices more attractive or more noticable. By harnessing people’s natural competition, the Charm project hopes to prove that nudges can help healthy living.

If this works (and this is only a trial so it’s too early to assume), it could be a really valuable tool for the NHS to help patients look after themselves. Patients could agree a health need with their doctor, record their progress via Healthspace and receive regular encouragment via their mobile or Blackberry.

Also this week, however is some more worrying news. The Information Commissioner, who is charged with overseeing data protection in England, has demanded immediate improvements to the lax treatment of personal data within the NHS. The demand comes hot on the heels of a string of incidents where personal data was lost, including one where Camden Primary Care Trust dumped computers containing medical notes of 2,500 patients in a skip.

While worrying, it’s not clear what this means for the national and regional systems of Electronic Patient Records being introduced into England by Connecting for Health. One on hand, the system will store all records centrally, which will take the responsibility for protecting them partly out of the hands of the NHS trusts who’s failure the Information Commissioner is today criticising. But, of course, individual doctors and nurses will still need to see records and they may have access to many more than they did before – making a potential breach more damaging.

In truth, it’s too early to tell what the impact of the new system will be on patient privacy, or for that matter, on patient power. But as these two stories show, there a going to be real changes.

At a recent trial event for our Democs kit, some people were questioning why we would want to let people add their own information to their patient record. Patients, they suggested, couldn’t be trusted to add accurate, useful data. Patient-provided information would be more likely to confuse than illuminate.

At the time, I was more hopeful, but I couldn’t put my finger on why. This story about an American political scandal that involved from personal record keeping obsessives Gary Wolf and Kevin Kelly might have part of the answer:

The CIA claimed that [Senior Democratic Politician Nancy] Pelosi had been briefed in detail about torture, and didn’t make any objection until long afterward. Therefore, if there is to be any kind of sanction for torture, it should hit the top Democrat who approved it as well as members of the Republican administration who ordered it. Pelosi, though, denies having been briefed about the torture.

Well, it turns out that Bob Graham [a Democratic Senator who was famous for keeping comprehensive notes on his daily life in spiral bound notebooks] was also supposed to have been briefed on these topics, and the CIA forwarded to him the dates of the meetings he supposedly attended. But the CIA records were inaccurate, according to his own personal records. Such was the respect for Graham’s notebooks, that this line of attack was closed within 48 hours.

This is interesting for several reasons. First, it’s worth noting that one man’s spiral bound notebooks were able to accumulate enough credibility to defeat the records of an organization whose very reason for existence is to collect information, communicate it to trusted members of government, and keep records of these communications. Anybody who has been following some of the controversy about patient records can add this strange example to their list of favorite anecdotes. Personal data, kept by a dedicated and interested party, even using yesterday’s technology, will trump large scale collection systems managed by bureaucrats.

In other words, Wolf and Kelly are arguing that what patients lack in technical knowledge, they make up for in commitment – it’s their record so they will take responsibility for making sure it’s right.

Hat tip: Boing boing