I’ve been running Democs games across the North West with the Pathways Team and have consulted lots of different groups with very different reasons to take an interest the project. Most Patient Groups and Forums seem to have very mixed opinions about the future of Electronic Patient Records and it’s been interesting to see how a group with opposing views can come to a general consensus about what should happen. Some people argue that the benefits to research and care completely outweigh any risks related to security with regards to sharing records, others remain adamant that consent is essential before records are created and before any information is shared for research and management purposes.

Without exception, every group I have worked with so far has pointed out the huge benefits Electronic Patient Records could bring to emergency care. Whilst people living with long term conditions and having regular contact with the NHS are more likely to want to engage with research project and access their own records, other group members raise more concerns about the security of the system and the safety of their personal records.

As well as working with Patient Forums and support groups, I have also been running games with vulnerable groups such as Mental Health and Gay, Lesbian and Bisexual Support groups. Many people have asked questions about how the new system would affect confidential NHS services including GUM clinics and Mental Health support services. As it stands, a lot of people don’t want certain information to be included on their general medical record and if people felt there was a risk of information being leaked, they may be less likely to seek treatment for certain conditions.

Interestingly, the same words have come up repeatedly with many groups. Security, Access, Research and Consent seem to be the four main discussion topics, although they often mean different things within different groups. The  issue of how we handle medical information does not seem to have been widely discussed up until now. I wonder if many of the concerns people are voicing would be equally as prevalent within any system for recording medical data. Having spoken to so many people, I personally think it’s important to address these concerns now and get the new system right.

One of the core values of the project is that in order for policy to work, it needs input from everybody. When we made our Democs discussion game we tried to make the issues as clear and as engaging as possible. But since then the project has been picked up by so many different groups that we’re learning that one size doesn’t fit all. Our adapted version is aimed at people with learning disabilities but may also be a great alternative for other groups who need a simpler approach. The process is roughly the same, but we have written different cards and a short video to help the issues come to life.

If you or someone you work with would find these materials useful, just get in touch and we can send you a copy. The results will be fed back into the project as usual.

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.

And if you want to know more about what that discussion might look like, you can check out the Who Sees What video that’s also released today:

Who Sees What – discussion game from Stephen Whitehead on Vimeo.

If that’s whetted your appetite for taking part, you can get a free copy of the game by downloading it from our Get Involved page or by ordering a free hard copy by emailing stephen.whitehead@neweconomics.org. Drop us a line if you’ve got any questions about the project or the game – we’re here to help!

On 23^rd to the 26^th September they’ll be in Chorlton Library, Manchester Rd, Chorlton cum Hardy.

And even more excitingly, from  28^th October to the 1^st November they’ll be at the Museum of Science and Industry, in Manchester as part of Manchester Science Festival. The festival is a great place to get more involved in science, with hands-on activities, walks, debates, comedy and the chance to discuss the future of science with those in the know. Our stand will be in the the Bio Medical Exhibition.

So, if you want to find out more about electronic patient records, or just fancy a chat why not drop in to one of these events and look for the Who Sees What? stand.

Also, if you’re running an event of your own and would like to invite people in your local area, why not drop us a line at nefguest1@neweconomics.org so we can add your event to our list.

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.

On this site, you’ll be able to read more about the proposals for electronic patient records, catch up on the latest project news find out how to get involved in the debate.