If you’re a follower of the Open Data Institute’s work, you may be aware that we’ve been helping organisations to make sense of publishing and accessing data during COVID-19, with free tools, guides, explainers, research and opinion pieces. As part of this project, we’ve started some new research looking at symptom tracking applications - you can find out more about why we think this is important in this recent blog post on our website.

Our Consultant, James Maddison, shares the start of a series of updates on this new research workstream.

What have we been working on?

My role in this new workstream is to understand who is doing what, and where, in the international symptom tracking app ecosystem. I’ll be looking at what data these organisations are collecting, using and sharing more widely, or publishing openly. Perhaps most importantly, I’ll be trying to understand what happens to the symptom tracking ecosystem post-coronavirus, and whether symptom tracking data and approaches could be used in other contexts.

Over the last few weeks, I’ve been looking at which organisations have created symptom tracking initiatives, in order to build up an initial picture of what the ecosystem might look like. As a starting point, our friends at Track Together, who we’ve helped to publish open data about symptom tracking, shared a list of other symptom tracking initiatives that they have made connections with. I began to look in more detail at these organisations, as well as build up a list of additional symptom tracking initiatives, capturing which organisations are connected to them and where they are based. 

At this moment in time, I’ve created a list of 38 symptom tracking initiatives. For the most part, the symptom tracking ecosystem seems to be primarily based around the UK or USA, although there are a number of initiatives in Israel, Bermuda, Ghana, Australia, Vietnam, Poland and Germany as well. There is an interesting mix of stakeholders represented; the majority of lead organisations are either academic institutions or private sector companies, but nearly all of the initiatives involve a collaboration with an organisation from another sector, e.g. public-private partnerships. Generally, it seems that initiatives are trying to achieve one or more of the following outcomes:

  • Providing guidance to users (medical or general advice)
  • Increasing transparency around symptom tracking (maps, dashboards, etc)
  • Collecting data to be shared for research purposes

What have we learnt?

Given the sheer number of new symptom trackers that have emerged during the pandemic, you would expect there to be a lot of value in these organisations working together. In most cases, the initiatives I’ve looked at so far seem to be independent of one another, which could be somewhat of a missed opportunity. 

We know from our scaling data-enabled projects research that when different initiatives work together, it can open up access to useful datasets that weren’t previously available, provide an opportunity to share lessons to learn from and make the initiatives more cost effective. There are some examples of initiatives in this list which are trying to work openly and provide collaboration opportunities. For example, the Coronavirus Census Collective is looking to coordinate with others to create greater access to COVID-19 data, and Infermedica are offering free access to their COVID-19 Risk Assessment API to support developers in creating their own COVID-19 solutions. It would be great to see more symptom tracking initiatives publishing calls for collaboration.  

What comes next?

The next step is to look at what data is being collected, how these organisations are using it and whether they are increasing access to the data, beyond this initial usage. This will help me to build up a better picture of the data ecosystem, so that we can start to identify new opportunities for symptom tracking data and applications, as well as the current barriers that could be unblocked through better stewardship of data.

Get in touch

If you’re working at an organisation with an ongoing symptom tracking initiative and you’d like to learn more about the benefits of making data more openly available, please get in touch.