The Department of Health last year ran a consultation into who should have access to patients’ medical data. More precisely, they wanted to know about ‘additional uses’ of patient records, apart from the patients’ medical care, and about the different systems which should be in place for ‘anonymised’ and ‘identifiable’ records. They had public meetings and focus groups, but most of the results were through a written questionnaire. The consultation sadly confirmed how predictably polarized opinions are on the issue. As E-Health Insider reports:

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.