This is a guest post from Sophia Hatfield of Pathways, a Manchester-based consultation and community engagement organisation.

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.