The COVID Symptom Tracker mobile app developed by King’s College London, Guys & St Thomas’ hospitals along with private nutrition data company Zoe Global is already on track to break a million downloads after quickly circulating on social messaging applications like WhatsApp, but are we being too hasty in adopting applications which promise to help curb the pandemic? The app, which
The COVID Symptom Tracker mobile app developed by King’s College London, Guys & St Thomas’ hospitals along with private nutrition data company Zoe Global is already on track to break a million downloads after quickly circulating on social messaging applications like WhatsApp, but are we being too hasty in adopting applications which promise to help curb the pandemic?
The app, which was developed in three days by the researchers, is simple enough: users fill in a profile about themselves and mark the symptoms they have or haven’t had.
Professor Tim Spector is a genetic epidemiologist at KCL, who has specialised in the genetics and histories of twins. At first, says the BBC, the app was aimed at twins taking part in Spector’s studies, but was revised to apply to the general public.
The idea is that data from the app could ultimately help shape a map of where outbreaks have occurred, as well as to assist in determining why COVID-19 affects some people worse than others. It is available on iOS and Google Play, but not accessible through search results on the latter – only by the direct link. Initially it was only available in the UK, but is now open to USA signups too.
Spector serves as director for Zoe Global, which describes itself as a nutritional science company, and he has written extensively about nutrition, including the book The Diet Myth.
Neither Zoe Global or KCL responded to requests for comment on clarifications about privacy and ethical concerns surrounding the app. A spokesperson from Guy’s and St Thomas’s NHS Trust would not comment, and suggested we speak with KCL.
There is, of course, a race to limit the damage caused by the pandemic, as well as glean as much data as possible to be made available for researchers. Privacy specialists such as Pat Walshe, who tweets @PrivacyMatters, have urged caution about racing to install apps that are not totally transparent on their use of data.
Walshe said he was “concerned by the rash of websites and apps intended to allow people to report of their COVID-19 symptoms”.
He added: “I’ve found it difficult or impossible to determine who is behind a number of them. They do not adopt appropriate standards of compliance with data protection law and I see dubious ethics.
“Could an app help? Yes, possibly. But I think we need the NHS to coordinate it in order to provide confidence, trust and protection.”
On the FAQ page of COVID Symptom Tracker’s website, the researchers state that the data is protected under GDPR and thus can “only be used for the purpose that you consent to” – which means it can “only be used for medical science and to help the NHS”. It adds that it minimises personally identifiable information, and that any submitted data will not be used for commercial purposes.
However, in its privacy notice, the researchers add that when data is shared with researchers in the USA, data may not be protected “in the same way, or as well as, under GDPR”. It also lists the institutions it shares data with as: KCL, Guys & St Thomas’ Hospitals, the NHS, Harvard University, Stanford, Massachusetts General Hospital, Tufts, Berkeley, Nottingham, University of Trento, and Lundt University.
Additionally, organisations conducting research on human beings led from England are required to seek Health Research Authority (HRA) Approval, reviewed by a Research Ethics Committee. The separate COVID-19 Social Study, for example, has received approval from the UCL Research Ethics Committee. We’ve asked for clarifications on these matters and are awaiting a response.
“People are losing their heads and ignoring the fact that doing medical studies is not just a matter of data protection,” Phil Booth, of health data privacy group MedConfidential, tells Techworld.
“For example, the World Medical Association’s Declaration of Helsinki states: Every research study involving human subjects must be registered in a publicly accessible database before recruitment of the first subject. One presumes that legitimate researchers and medics in UK universities and hospitals do not wish to deviate from such fundamental, internationally agreed principles.”
Other efforts have taken an open source approach to tackling the pandemic, including the Open COVID-19 Data Working Group, which has created an open access database that forms the data for a COVID-19 HealthMap.
The World Health Organization is also working on an open source application that will be available on Android, iOS, and online, to curtail coronavirus, and has called for contributions.