Signing up to "Our Future Health"

But how many cigarettes did I smoke in 1980?

I have written several times about Our Future Health, the groundbreaking project which aims to recruit five million people to share their medical records and be monitored for research. I have banged on at some length about the importance of supporting efforts like this to make use of the vast data resources of the NHS in the hunt for new medical advances, and about my impatience with privacy concerns I see as overblown. So it was high time I put my money where my mouth is - by signing up.

The process is pretty simple. You go to the website, fill in a form and are given material to read before being asked to consent to share your medical data and join the programme. In an FAQ there is a clear message that you are embarking on an altruistic mission:

“Joining Our Future Health is, first and foremost, an act to help others. You will be giving your time and data for free to help researchers make discoveries about human health and disease.”

Next, you are faced with two tasks - complete a lengthy questionnaire about your health and lifestyle, and book an appointment at a clinic for some tests.

The questionnaire goes into great detail, in particular about your drinking and smoking habits. I found myself thinking back more than forty years to the two years when I smoked, including a year as a student in Paris when I was under the misapprehension that a packet of Gauloises made me look cool. Ah, but how many did I smoke each day - 5, 10, 20? No idea.

Paris, 1980 - no sign of a Gauloise

Then on to my current alcohol intake - how many glasses of red wine, white wine, beer, spirits, fortified wine and alcopops did I consume each week? Now when the doctor asks you the same question a friend tells me they halve the true number on the basis that the GP will double it. But I felt a greater duty to answer this anonymous survey accurately, even if by every question there was an “I’d rather not say” option.

My clinic appointment was in a branch of Boots in London’s Westfield shopping centre - one of 79 locations across England where Our Future Health is testing volunteers like me. For the most part they have been set up in urban areas with diverse populations and, unlike me, people have been invited to come along. The issue with large scale projects like this is getting a representative cross section of the English public (note that this is just an NHS England project) so a lot of work is going on to attract people from communities which are sometimes under-represented in medical data studies.

In a cubicle at the back of the Boots store a nurse measured my height, weight, and waist size, took my blood pressure and pricked my finger for a cholesterol test. As she prepared to take a blood sample, I warned her that my veins are hard to find - on one hospital visit it took four goes, two in the arms, two rather painfully in the back of my hands before they struck lucky.

But this time I was in the hands of an expert - she found a vein, got her sample first time and within ten minutes I was out and on my way home, fully enrolled. So what happens next? I am eager to plunge in to my role in advancing medical research. Back to that FAQ:

“That’s all we need at this stage.”

Ok…

“In the future, if you agree, we may contact you about other aspects of the programme.”.

They might, for instance, ask me to complete more questionnaires, have further blood tests or scans, or take part in other research studies.

At every stage the stress is on the voluntary nature of this exercise, with volunteers free to refuse any more involvement or indeed to leave and have all of their data wiped from the project. This softly, softly approach means that people are not even obliged to fill in the initial questionnaire or go to a testing clinic to count as a volunteer, though they miss out on a £10 voucher given to anyone who completes all the steps. But of the 1 million people who have consented to join the programme and share their data, only 600,000 have gone on to complete the questionnaire and have the tests.

While I was slightly disappointed to be told that I was not immediately to be drafted into the front line of research, I can understand the cautious approach. When I did a Google search for the project the first question in the ‘People also ask” section was “Is Our Future Health legitimate?” and there were further questions about its funding and whether it was supported by the NHS.

There is understandably a great deal of caution and sometimes distrust about the idea of sharing medical data, even for vital research. Our Future Health knows that if it is to succeed in what I consider a noble mission its first priority must be to win public trust. It is early days but so far it seems to be doing okay.