Demos is one of my favorite think tanks, a left-of-center research institution responsible for many of Tony Blair and New Labour’s policies. Peter Bradwell and his colleagues are running an interesting research project through a series of focus groups with citizens in different parts of the UK. One of the topics is how personal medical information is shared and I was invited to present to a group in Bradford. The city, along with Nottingham, has the lowest internet usage in the UK so I was curious to hear what they thought. The full slides are on the PHR encyclopedia and the video is below.
There are two things that surprise most Brits when I tell them about electronic medical records. First is that very little information is shared. This is not out of privacy fears, but just because too little information is in computers, and too few are connected to each other. That is why when you go to your doctor they often have no idea what happened at your previous appointment with another doctor. And second is that the UK, or at least England, is one of the most advanced countries in information sharing. It is perhaps as good as it gets in data connectivity at a large scale.
But it is early days, technology is advancing quickly, and technology gives you choices. So the question to the audience was: what choices would they make in sharing information?
The Bradford crowd were lovely to talk to. Engaged and polite, but also with a wicked sense of humor. Like most other people, they wanted all their clinicians to have access to all their medical notes. However, they struggled with the issue of access by others, and each of them made different choices, for different reasons. And this is the problem with national data sharing. It does not allow personal decisions, something that personal health records platforms, including ours, are designed to handle so well. This why I get so excited about our work and how we can help patients.
The second session was about sharing medical information with researchers and Stephen Whitehead from the New Economics Foundation led the discussion. He is currently managing the Who Sees What? deliberation project on the ways that personal data is used by the NHS. Most people were in favor of sharing data for research, but many felt uncomfortable about payments from and access by pharmaceutical companies, even though they all understood the important contribution the companies make to curing diseases. PatientsLikeMe is interesting because its founders aimed to create a safe environment for patients to share their data with researchers and companies. They key is that the individual patient is in control of the data sharing. It is worth listening to the PKB interview with Dr Paul Wicks from PatientsLikeMe as he discusses these issues.