Schmoozing for a good cause

Just got back late last night from a terrific meeting at the Hopital Necker in Paris, to discuss a new AKU clinical programme. So I’m now still sifting through my email backlog and preparing for tomorrow’s trip to Manchester to meet with Protein Technologies Ltd, which is doing our new enzyme replacement project.

In the meantime, here’s a very interesting article I found in the latest OrphaNews:

How forging relationships with scientists can help patient groups forward their research aims

An interesting new paper from a researcher at the Public Policy and Center for Society and Genetics at UCLA, published in the journal Social Studies and Science, explores how a rare genetic disease patient organisation can successfully draw research to its cause by the nature of the social relationship established with scientists working in related fields. Via a series of interviews with leaders of patient groups and the scientists involved with these groups, the author examines the ways in which patient groups are able to attract – and influence – scientific research via what the author labels ‘sociability,’ ie, a close relationship established between patient organisation members and researchers through which the patient group is able to influence the research agenda.

The article, entitled Generating Sociability to Drive Science: Patient Advocacy Organizations and Genetics Research, shows how “strategic manipulation” of sociability can allow a patient organisation “substantial influence” in the arena of research, although such social ties are not easily attained and “most forms of relationship-building offer [patient organisations] much less influence on research”.

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