An exercise in civic reciprocity in central Croydon where the NHS BioBank project is camped in one of those half-empty blocks that give Croydon its shades of the 60s and 70s ambiance. The place was filled with 40-69 year old citizens happy to give up almost three hours of their time to be measured, assessed and sent on their way minus Hancock’s armful of blood but fortified by a biscuit back into the South London dusk. 170 people a day are turning up to participate and give their time (travel expenses paid) to give their data in the cause of greater understanding of our journey to the end of our days. About half a million of us will have participated by the end of this project and our samples are stored in a monster freezer in Cheadle – another first for the North West now with the world’s largest collection of frozen pee.
Sharing Data for Life
The questions un-reeled on the screen about how often you got irritable or piled your plate with vegetables (illustration of a mound of carrots). It is an interesting exercise in self-diagnosis and as you clock the answers (or in the mental arithmetic bit, the lack of them – a good time to remember that the answer to everything is 42) you just have to hope that all this is worthwhile.
At the end you get a form telling you what is normal and what is not based on info like heel bone density. Up to you what you do with it and some of it ie blood pressure is information you can do something with. But the information given out seems a rather grudging return for our participation and it misses an opportunity to engage with citizens in a way that would make clear the benign consequences of electronic record keeping with all our names and addresses being available off our GP’s list. If we are all to be on the Government/NHS computer we want some payback. I put in NHS Biobank as a search term in the new Government databank the platform where we can get into the government data and the search drew a blank. No big deal since these are lelatively early days for the project but I would hope that in future we can access the composite data itself and the users to which it has been put perhaps.
Trust and Participation
This is in part prompted by catching up with the thoughts of Don Tapscott a Canadian guru on the digital and e- world. He talks about the new environment for businesses and organisations that have customers. Customers he say used to be outside, now they are inside. This is the age of transparency where businesses cannot hide and where their values if not sincerely held and hard- baked into their organisational foundations are exposed as inauthentic and they loose that most precious of assets -trust. All of us who turned up to the Biobank and gave three hours or more of our time (to include travel) left their blood, urine and spit as well as the answers to the questionnaire because we trusted the NHS and the researchers to do good things with the data like improved prospects for us and our children. It would be an extension of that mood of trust if the researchers gave us all not just our own data but all the data back suitably anonymised. We could do our own mashups and stuff. Most of us would not bother of course but the action would make it clear that health is a partnership. Our lives are our own and do not belong to the researchers. I turned up for you. Your turn to tell me what you found. This may be an ethical question but much simpler – it is just good manners to invest in feedback policies and procedures In the meantime, I suppose we sign up for our NHS Health Check.
If I lived anywhere near Sheffield it would have been interesting to go to a meeting on 22nd March organised by the UK Ethics and Governance Council which gives UK Biobank independent advice on ethics and ask about this. Academics just like health care professionals have a lot to learn about modern user and stakeholder engagement.