Data-driven approaches to the COVID-19 pandemic range from entirely automated, AI-powered processing to “mundane” uses of digital information and statistics to inform decision-making. The pandemic has accelerated the consideration of a number of priorities in the data and technology space, and these are being reflected in the present data strategies of the UK Government.
The survey data that we have analysed so far indicates that there is a difference between people’s willingness to share Mobility data and Medical data when the data will be used to monitor the appropriateness of the UK COVID-19 Alert level. In Part 2 of our blog series, we will report some preliminary observations from examining the answers to the Data Detail questions in our survey – questions that asked about what kind of Medical data and Mobility data participants would be willing to share for this purpose.
Our initial analysis indicates that deciding how much data-detail to share is complex and involves considering what the data type is, who the data is being shared with, how it is to be stored, and what the Covid-19 alert level is. Further, there is notable variation across participant’s answers. Therefore, we need to delve deeper and consider how participant’s answers pattern at an individual level, for it may be that participants show a consistent bias towards/against certain data sharing practices, regardless of the factors that we have tried to investigate.
In today’s world it is hard to think of any service, industry or sector that is not in some way driven by data. Data-driven systems can be very visible when they are synonymous with a device (such as smart phones, watches, and home speakers) but also near invisible as they work quietly in the background, helping to shape the world in which we live. These systems are utilised to provide services or products, to make decisions, to justify decisions, and to influence how people behave and think.
For many gay and bisexual men, mobile dating or “hook-up” apps are a regular and important part of their lives. Many of these apps now ask users for HIV status information to create a more open dialogue around sexual health, to reduce the spread of the virus, and to help fight HIV related stigma. Yet, if a user wants to keep their HIV status private from other app users, this can be more challenging than one might first imagine. While most apps provide users with the choice to keep their status undisclosed with some form of “prefer not to say” option, our recent study which we describe in a paper being presented at CSCW 2018, finds privacy may “unravel” around users who choose this non-disclosure option, which could limit disclosure choice.
On Monday, the news website Buzzfeed released a story revealing Grindr , the gay hookup app, was sharing personally identifiable information, including HIV status information with third parties. Grindr is one of the most popular gay hookup apps on the market, with over 3.6 million daily active users. Buzzfeed learned that Grindr was sharing certain pieces of user information with two companies, Apptimize and Localytics, companies that operate in the background to help Grindr optimize their user experience. (Note: In a statement, Grindr have said they will no longer be sharing HIV status information with third parties).
In the final weekend of my two month long PhD secondment in Germany, I visited the Dachau concentration camp, just north of Munich. It was the first time I’d visited a memorial site of this kind, so was an especially moving experience. Dachau was a uniquely notorious camp, used as a “model” for the other camps that came after, and was the only one to exist throughout the entire war.
As part of my literature review, I have identified a number of papers examining the attitudes and preferences to sharing patient data for secondary use purposes. One of the themes of these studies is a high number of respondents reporting their support for the use of data in medical research, while a much lower number reporting a willingness to share their own data. In this blog post, I suggest bystander intervention, a social-psychology theory to explain these somewhat paradoxical views.
Going to see a psychiatrist can be a daunting prospect for many due to the often-intimate information being disclosed. The doctor-patient confidentiality regulations are designed to provide an environment in which the patient feels comfortable to disclose and discuss very sensitive information without fear of negative consequences. While the intimate information disclosed during a session must remain confidential, so too should the attendance itself.
Welcome to my official PhD research website. I will be keeping this website up-to-date with findings from my own research, discussion of other research in related areas, as well as posting on news articles and current affairs that relate to my work.