Thank you for the data

Here are three anecdotes that show ways in which I’ve shared data with different types of organisation, and how they’ve shared data with me.

Last year we donated some old children’s toys and books to Julian House. When we dropped them off, I signed a Gift Aid declaration to allow the charity to claim additional benefits from our donation. At the end of the tax year they sent me an email, as I requested, to let me know how much they had raised from the donation. It was nice to know that the toys and books had gone to a good home and that the charity had benefited.

A few months ago, we switched energy provider to get a (much!) better and greener deal on our energy bills. The actual process of switching was easy. But we had to jump through a few hoops to actually get a quote. That mostly involved looking at charts and summaries of our current usage, collecting details on our plan and then using that to get a quote from some alternative suppliers. The government are still thinking about whether midata should apply to the energy sector. I don’t think it should because it’s too limited. An open banking model would be much better for consumers.

We decided to go with Octopus as our new supplier. Three months after the switch they sent me a lovely email, a “personal impact report”. It contained some great insights into our energy usage and the impacts on the environment of our greener energy consumption. For example, it told me that 18% of our electricity came from anaerobic digestion. Our biggest renewable supplier of solar energy was Bottreaux Mill Farm in Devon. It made me even happier to have switched, whilst also wishing I’d done it sooner.

Seven years ago I signed up to 23andMe and let them sequence my DNA. I was curious to know what I might learn and whether my data could be useful in medical studies. There are reasons to be wary of sharing this type of personal information, but it’s an informed decision. I understand what it is the company is doing. And I’ve also taken the time to read their privacy policy, which is clearly laid out.

23andMe email me on a regular basis to let me know when my data has contributed towards some published research. Looking at the site I can see I’ve contributed towards 19 published studies, including this one on autoimmune conditions. Our family is definitely interested in supporting any efforts to address autoimmune conditions. Unfortunately I often can’t look at the research because the papers aren’t open access.

I’ve been thinking about these types of exchanges after reading a short paper by Kadija Ferryman. In her paper she suggests that we should think of data as a gift. In the giving of a gift, there is the act of giving (sharing data), the act of receiving (holding that data) and often some form of reciprocation. These three anecdotes illustrate different types of reciprocation. In each case, an organisation has written me a little thank you note to show me how a data gift has been useful to them.

From a data collection point of view, none of the three organisations has had to more than they would have done anyway. Gift Aid requires some extra book-keeping as part of the policy, Octopus will be keeping detailed records on our energy consumption and their energy purchases. And 23andMe will have a clear view on when and where aggregate data is being shared with researchers.

They’ve just chosen to show that they appreciate my data gifts and, in some cases, have given me a data gift in return. I’m now more likely to donate to Julian House, more likely to stay with Octopus, and have greater trust in continuing to let 23andMe store my DNA profile.

Thinking about data as a gift is another useful analogy that we help us think through the appropriate ways to design data sharing arrangements. I know I’d definitely like to receive more data thank you notes.