Next week, our friends at Demos and Patient Opinion are hosting an event at Guys Hospital in London (in this rather spooky place) about the likely impact of Web 2.0 and networked thinking on health care:

We are witnessing an explosion in online and mobile communications activity. The trends in internet usage have been recently dubbed ‘Web 2.0’ because they allow us to realise the power of networks through new, easily accessible tools. There are big implications of seeing ourselves as a ‘network society’; we are re-shaping our understanding of user-based innovation in public services. Citizens increasingly expect the service experience to be about reciprocity and mutual problem-solving, not the passive acceptance of a set of generic solutions.

Paul from Patient Opinion will speak about the democratisation of voice and I will talk about the democratisation of data.

For me, there is a crucial issue in there somewhere about the locus of citizen participation - where it happens, who sets the rules and who owns the data.

In the UK, in the late New Labour period, I sense that the government is largely out of ideas when it comes to meaningful participation methods. There is clearly a desire to do consultation better, but this often comes up against an equally strong control and media/perception management reflex. Consultation takes place largely on the government's own terms, on its own turf and within a presidential culture that celebrates its ability to ignore the strongly expressed views of millions of people as a sign of strong leadership. In short, I think the government's position on consultation is rather confused, and I am intrigued to see who will pick up the slack and take this forward. It is certainly encouraging that the Cabinet Office in talking to people like MySociety to look at some aspects of this.

What interests me, though, is participation rather than just consultation. Rather than just invite people in to participate in official processes, I would like to also see shared spaces between government and civil society where both sides can come together and participate in idea formulation, policy making, problem solving, etc, but on equal terms. A prerequisite for this is a clear position on ownership and control of data. There are many exciting things that can be done with data generated by citizen participation, such as aggregate-level anonymised data transformations and mashups, but we need to be clear who owns the data and what that means.

Patient Opinion acts as an independent intermediary dedicated to helping people tell their stories of experiences with health care, and funnels the learning up from this anonymously to the services themselves to help the improvement process. Why does it work? Because that is their sole focus and they are free from commercial and/or political influence. Patients cannot have a meaningful conversation with the Department of Health because it is too big, and with the best will in the world, it is hardly independent. But PO is one small piece of the puzzle. I am hopeful that the 'social web' will help us build these new places and contexts where citizens and official bodies can come together on equal terms to co-create value and work together to solve problems of governance and public service provision, and I hope that official bodies can provide the underpinning data services to make this engagement worthwhile.

See also :

• Web 2.0, Participation and E-democracy


• Our Health, Our Care, Our Say?


• Participation links