Over one hundred people from medical charities, patient groups, healthcare organisations, industry and think tanks joined us for the launch of Understanding Patient Data on 6th April.

The event provided the opportunity to unveil our new website, to talk more about the work we have been doing to find the best words to use about data, and to update people on our plans for Understanding Patient Data.

Taking advantage of the expertise in the room, we also gathered advice on how to develop champions, people from across the sector who can make the case for the importance of responsible uses of data. There was a clear message that we should focus on supporting local conversations – providing the tools, resources, training and practical support for conversations to happen at a grassroots community level. We heard many creative ways of doing this and will work with existing networks, including patient groups and charities to start this off as a priority.

There were also some great ideas of new resources for us to work on, and calls for us to help develop a common voice for the sector, providing consistent messages about the importance of using data. Our aim is to create a hub to share information, to help spread best practice, and to build momentum across different engagement activities. We will also continue to convene cross-sector discussions to share ideas.

The event was also an opportunity to highlight our upcoming work on new and emerging digital technologies. We will look at how new technologies, such as machine learning, will use patient data and what effects they might have on a public conversation. More details will be added to the website as we develop this work.  

We’ve been really pleased by the reaction so far. You can read more from Simon Denegri, Chair of Involve and a member of our advisory group, who posted his take home messages from the day.

Please keep in touch. Let us know if you have any case studies, or examples of initiatives you are already involved in. Any further ideas about what we should be doing, or suggestions of content for our website would also be very welcome. You can contact the team at hello@understandingpatientdata.org.uk.