Why I’ve been sharing my health data for over 70 years
We’re living in an era of big data that is influencing all aspects of our lives, but maybe our health most of all. From paper records kept in drawers at GP surgeries to creating networks of digital information that can be shared between GPs and hospitals, we are benefiting more than ever before from our health data. This month, people will also be given the chance to say how their health data is shared for planning and research with NHS England.
It may be that no one has felt this progress as acutely as the members of the National Survey of Health and Development, whose health data has been under intense scrutiny for over 70 years. David Ward is a participant in the National Survey and the Alzheimer’s Research UK funded Insight 46 study that is investigating brain health and dementia risk in this group. He tells us more about what it has meant to share his health data for society’s benefit as well as his own.
I am happy to boast that I have been described as one of the best-studied people on the planet. And I’m quietly proud that information about me, ranging from how many pairs of bootees I had at birth to the state of my memory now, has appeared in at least eight books and 700 other publications.
I’m a member of the world’s longest-running birth cohort study, the National Survey of Health and Development, which began keeping tabs on me and 5,361 other babies in March 1946. After 72 years, the survey, now hosted by the Medical Research Council Unit for Lifelong Health and Ageing at University College London, knows me better than I do.
It followed me through school, testing my brain, checking on my development and keeping tabs on my educational progress. It stayed with me through university, noting that I nearly died of a pneumothorax just before finals in 1967, and then recorded that I had married, become a dad and wandered around the country to new jobs.
It is still with me in my retirement and I can confidently predict that it will be around to record when and how I eventually shuffle off this mortal coil.
The files on me, both paper and digital, must be enormous because in its time the survey has gathered information on a vast range of subjects: the impact of the welfare state; the unfairness of the eleven plus; the effects of pollution on health; smoking and drinking in pregnancy; maternity care; the rises in obesity, heart disease and diabetes; social mobility; the relationship between birth weight and blood pressure in later life. And much, much more.
I presume that, even in those innocent pre-data protection days after the Second World War, my mother gave formal permission for all the facts about me to be collected, investigated and disseminated.
I’m also pretty sure that she regarded the National Survey as a noble project. And so do I.
All the members I have met (we had parties when we were 65 and 70) are pleased to give their data freely in the hope that it will benefit others; it’s our legacy to the world and it makes us feel a bit special.
We have also been a bit curious: why, first when we were 53 and often since, have we had to stand on one leg with our eyes shut, an exercise that has resulted in a lot of stumbling and tottering?
It seems that those who did badly in this test (and a couple of others) have a higher mortality rate than those who did well. These simple checks could be used more widely to predict those most at risk of life-threatening health conditions in years to come.
Now a sub-group of 500 of us are being investigated for a study on dementia, thanks to funding from Alzheimer’s Research UK. Twice my failing brain has been tested by a rigorous battery of cognitive tests lasting the best part of a day. But as I struggled to crank up my memory and to persuade both sides of my brain to collaborate, I thought of the people I meet at regular sessions of Singing for the Brain run by the Alzheimer’s Society.
It might just be that all those tests and the data they provided will eventually make a tiny contribution to halting the progress of a condition that frightens us all.
David Ward is a former Guardian journalist who now works for Theatre by the Lake in Keswick, Cumbria.
If you’d like to take part in dementia research, you can sign up and find studies near you through Join Dementia Research.