The COVID-19 pandemic is a life changer for so many of us and is also influencing how we adapt our thinking across many areas of our lives. For me, one of those changes is about how I share my data.

Until now I never thought twice about giving my data to research or participating in clinical trials, even ones involving bodily intervention. I like to think that I am helping the development of health innovations for ours and future generations. You could call it my contribution to society.

My background is in creating systems for the collection of data for research at Imperial College for 20 years. Because of my present role at the College, when I was contacted by one of the staff at Imperial asking if I would take part in a couple of projects to support the UK’s efforts against the pandemic ‘COVID-19 Community Involvement: Let's talk about it!’, I volunteered enthusiastically.

Firstly, we were asked to discuss how we felt about using a contact tracing app with the aim to identify and alert users if they have come into contact with someone infected with COVID-19. The premise is this: you download the app onto your mobile and switch on your Bluetooth, which enables the app to trace who you have been in close proximity with recently.

When someone self-reports symptoms of COVID-19, the app generates an automatic home test request for that person. If the test is positive, an instant signal is sent to you and a message advising all other users that have been in contact with you and identified by the tracing app to self-isolate. Yet on first reaction, the idea that I could be exposing my phone data with just anyone on Bluetooth and that all my recent contacts would be known to a faceless server unnerved me.

The second project I was involved with during this time is a trial of a home antibody test kit that is supposed to detect if you have had COVID-19. The distribution of these kits is facilitated by a large market research company in the UK. Once again, the fact that a large private firm whose clients buy information for marketing/research purposes would hold my details, made me feel uncomfortable.

Why was I so troubled about the protection of my data in these two instances, when I am otherwise so willing to give it to our national health services? Like so many other people I talked to about this issue, on reflection I have come to the conclusion that I trust health researchers who work for the public good but not necessarily companies whose business is ultimately to make profit.

So, what did I do? I did agree to take part in the end. What influenced my decision to participate in these two COVID-19 innovations was the central message and overarching spirit that we are ‘all in this together’. These developments, which could slow the spread of the corona virus pandemic, could be real life savers!

Crucially, as a result of being involved with these projects, I now better understand the value these innovations could bring to society and am even more willing to share my data now and in future health projects.

The main learning of this experience? Knowing how your data will be used and the value that it brings to society is important to the individual and something that companies should present at the forefront of any requests for health data of any kind.

Ania Henley

Ania Henley is an adviser to the National Institute of Health Research (NIHR) Biomedical Research Centre (BRC) Public Advisory Panel at Imperial College, London and to EIT Health on Citizen and Patient Engagement. She also sits on the EIT Health board on Ethical Legal and Societal Issues where she represents the UK & Ireland. She is a member of the editorial board of Data Saves Lives.