A consequence of being a patient for many years has led me to develop something of an aversion to being seen as a walking data set. As a result, I actively resist questionnaires, surveys, focus groups and any attempt whatsoever to have my experience captured. In the session on data which I introduced at our Transformathon, I outed myself as something of a “data hater”.
Watch it here if you have not done so already http://theedge.nhsiq.nhs.uk/sessions/mesmerising-measurement-engaging-teams-in-measurement-for-improvement/
I realise that it is not data itself that I have an aversion to but the feeling I had of being an immobile specimen being observed and enumerated for some other person with the power to act upon (or not as the case often seemed to be….)
My descent into GOP-hood (Grumpy Old Patient) was stopped in its tracks by reading this article from John Loder of NESTA. The article which went a long way towards convincing me of a new world where data is produced, owned and controlled by patients on our terms who as a result are in the driving seat of research.
It is an excellent article written in terms that a data-hating non-geek GOP like myself can understand with really helpful links to where to find out about the new breed of Citizen Scientist at the forefront of a new generation of patient-led research.