Data “sense makers” needed – why not patients?

The big hit of the 2012 Olympics and Paralympics was undoubtedly the “games makers”.  Those big purple pointy fingers were everywhere.  We need something like that – knowledgeable, readily identifiable, accessible, customer facing –  to help people through the coming data deluge which Tim Kelsey, Giles Wilmore and the NHS Commissioning Board promise to start sending our way shortly.  We shared our thoughts about the impact of this recently.

Second opinion about the numbers

We welcome breaking off the locks from the NHS data storerooms.  But, as David Gilbert rightly notes, that isn’t enough; people need help to make sense of it all.  Healthcare professionals may not be the best people in every case.  And besides, what’s wrong in getting a second opinion about what the numbers mean? Especially when they are “my numbers”.

Intermediaries to signpost and guide, to broker and help interpret patient relevant data seems an excellent role for some patient leaders, assuming that they are well prepared and supported for this role.   Not everyone will want to do it, but some will warm to it.  And what could be better than patients showing other patients how they could take more control through better decision making about their own health?

The digital present is patient-led

Some entrepreneurial patient-led organisations are already doing it.  The future is already becoming the digital present.

On the positive side: Online technologies open up the possibility of entrepreneurial solutions. We know several patient leaders who have set up incredibly effective means to communicate with, and support others, via twitter, and online fora. Check out Dave de Brokart @ePatientDave, Michael Seres @mjseres and Paul Buchanan @theGBDOC who are all on Twitter.

Intermediaries are needed to be “sensemakers” for health care data.  Exposing people to raw data is like gazing on the head of the Medusa. It stops action rather than informs it. We’ve argued that repeatedly and support the need for patient leaders to take on this role if they wish.

But don’t set patients up to fail

Signposting and interpreting underpin better patient choices. Commissioners need to understand that and act accordingly. Just throwing open the data vaults will achieve nothing, except give those who wish to continue denying informed choice to patients – and they are legion – the excuse to say “see, they didn’t want it or use it so we won’t bother doing it anymore.”

The Moore Adamson Craig Partnership supports user and public participation,  trains lay representatives and develops responsive  health, care and education organisations.  Feel free to contact us to discuss the opportunities.


Leave a Reply

Your email address will not be published. Required fields are marked *