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Final Report - Data-Driven Responses to COVID-19 Lessons Learned

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.

Public willingness to share data – Data Detail Initial Insights (Part 2)

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.

Public willingness to share data – OMDDAC’s initial findings (Part 1)

  • We deployed a survey asking about people’s willingness to share data so that the appropriateness of the UK COVID-19 Alert level could be monitored
  • For one section of the survey, our headline initial findings are that people are more willing to share data when:
    • as the UK COVID-19 Alert level increases,
    • it is anonymous, rather than identifiable (include name and address)
    • it is being shared with a Public Health Body or the Local Authority, rather than a Regional Police Force or a Commercial Company the data is medical rather than mobility data

Privacy as a Currency in Our Data-Driven World, and its Lack of Value in Emergency Contexts

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.

What We Disclose When We Choose Not To Disclose - Privacy Unraveling Around Explicit HIV Disclosure Fields

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.

Privacy&Us Training Event in London

My colleague Luiza Jarovsky, a Lawyer and PhD fellow just posted about a training event we both attended last week, and I have copied what she wrote below:

Grindr’s Privacy Failing

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).

Unknown Prisoner?

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.

Bystander Effect > Disclosure?

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.

The Unintended Consequences of “People You May Know”

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 privacy and behaviour research website

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.

portfolio

publications

Signal Appropriation of Explicit HIV Status Disclosure Fields in Sex-Social Apps used by Gay and Bisexual Men

Warner, M., Maestre, J. F., Gibbs, J., Chung, C. F., & Blandford, A. (2019, May). Signal appropriation of explicit HIV status disclosure fields in sex-social apps used by gay and bisexual men. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems (pp. 1-15).

In our interview study (n=28) with HIV positive and negative men who have sex with men (MSM), we found some users preferred to keep their status private, especially when disclosure could stigmatise and disadvantage them, or risk revealing their status to someone they knew offline in a different context.

Conducting Research with Stigmatized Populations: Practices, Challenges, and Lessons Learned

Maestre, J. F., Eikey, E. V., Warner, M., Yarosh, S., Pater, J., Jacobs, M., ... & Shih, P. C. (2018, October). Conducting research with stigmatized populations: Practices, challenges, and lessons learned. In Companion of the 2018 ACM conference on computer supported cooperative work and social computing (pp. 385-392).

This workshop will invite researchers and practitioners to present, discuss, and compare strategies and experiences when working with stigmatized communities in the context of the ever-evolving nature of technology.

Privacy Unraveling Around Explicit HIV Status Disclosure Fields in the Online Geosocial Hookup App Grindr

Warner, M., Gutmann, A., Sasse, M. A., & Blandford, A. (2018). Privacy unraveling around explicit HIV status disclosure fields in the online geosocial hookup app Grindr. Proceedings of the ACM on human-computer interaction, 2(CSCW), 1-22.

Our qualitative analysis of online comments (n=192) explores the user views of an HIV intervention integrated into the geosocial hookup app Grindr.

Self-censorship in Social Networking Sites (SNSs) – Privacy concerns, privacy awareness, perceived vulnerability and information management

Warner, M., & Wang, V. (2019). Self-censorship in social networking sites (SNSs)–privacy concerns, privacy awareness, perceived vulnerability and information management. Journal of Information, Communication and Ethics in Society. Chicago

This paper aims to investigate behavioural changes related to self-censorship (SC) in social networking sites (SNSs) as new methods of online surveillance are introduced. In particular, it examines the relationships between SC and four related factors: privacy concerns (PC), privacy awareness (PA), perceived vulnerability (PV) and information management (IM).

Fight to Be Forgotten: Exploring the Efficacy of Data Erasure in Popular Operating Systems

Gutmann, A., & Warner, M. (2019). Fight to be forgotten: Exploring the efficacy of data erasure in popular operating systems. In Privacy Technologies and Policy: 7th Annual Privacy Forum, APF 2019, Rome, Italy, June 13–14, 2019, Proceedings 7 (pp. 45-58). Springer International Publishing.

We analysed the user interface of two popular operating systems and found: (1) inconsistencies in the language used around delete and erase functions, (2) insecure default options, and (3) unclear or incomprehensible information around delete and erase functions.

“I feel like only half a man”: Online Forums as a Resource for Finding a “New Normal” for Men Experiencing Fertility Issues

Patel, D., Blandford, A., Warner, M., Shawe, J., & Stephenson, J. (2019). " I feel like only half a man" Online Forums as a Resource for Finding a" New Normal" for Men Experiencing Fertility Issues. Proceedings of the ACM on Human-Computer Interaction , 3(CSCW), 1-20.

We found that online forums play a valued role in facilitating connections between men experiencing an often stigmatised condition. These forums offer men accessible and private spaces which allow for more open discussion, helping them to make sense of their situation.

Evaluating ‘Prefer not to say’ Around Sensitive Disclosures

Warner, M., Kitkowska, A., Gibbs, J., Maestre, J. F., & Blandford, A. (2020, April). Evaluating 'Prefer not to say' Around Sensitive Disclosures. In Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems (pp. 1-13).

This research highlights complexities around designing for non-disclosure and questions the voluntary nature of these fields. Further work is outlined to ensure disclosure control is appropriately implemented around online sensitive information disclosures.

Enhancing privacy through the visual design of privacy notices: exploring the interplay of curiosity, control and affect

Kitkowska, A., Warner, M., Shulman, Y., Wästlund, E., & Martucci, L. A. (2020, August). Enhancing privacy through the visual design of privacy notices: exploring the interplay of curiosity, control and affect. In Proceedings of the Sixteenth USENIX Conference on Usable Privacy and Security (pp. 437-456).

In this paper, we investigate how to improve privacy notice design to enhance privacy comprehension and control, while inducing more positive feelings towards these notices.

RE-AIMing Predictive Text

Higgs, M., McCallum, C., Sutton, S., & Warner, M. (2021, April). RE-AIMing Predictive Text. Association for Computational Linguistics.

Our increasing reliance on mobile applications means much of our communication is mediated with the support of predictive text systems. How do these systems impact interpersonal communication and broader society? In what ways are predictive text systems harmful, to whom, and why? In this paper, we focus on predictive text systems on mobile devices (Figure 1) and attempt to answer these questions. We introduce the concept of a ‘text entry intervention’ as a way to evaluate predictive text systems through an interventional lens, and consider the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) of predictive text systems. We finish with a discussion of opportunities for NLP.

“Oops…”: Mobile Message Deletion in Conversation Error and Regret Remediation

Warner, M., Lascau, L., Cox, A. L., Brumby, D. P., & Blandford, A. 2021. "Oops...": Mobile Message Deletion in Conversation Error and Regret Remediation In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems (pp. 1-13).

Observing data-driven approaches to Covid-19: Reflections from a distributed, remote, interdisciplinary research project

Allsopp, R., Bessant, C., Ditcham, K., Janjeva, A., Li, G., Oswald, M., & Warner, M. (2021). Observing data-driven approaches to Covid-19: Reflections from a distributed, remote, interdisciplinary research project. Journal of Legal Research Methodology , 1(1), 3-25.

This article takes the form of a series of reflections from the points of view of individual project researchers–the specialist legal researcher, the think-tank Co-Investigator, the post-doctoral researcher, statistical and data science researchers, and the Principal Investigator–and organised under two main themes-project management and internal communication; and methodologies/interdisciplinary research.

Information-Seeking, Finding Identity: Exploring the Role of Online Health Information in Illness Experience

Patel, D., Pendse, S., De Choudhury, M., Dsane, S., Kruzan, K. P., Kumar, N., ... & Warner, M. (2022, November). Information-Seeking, Finding Identity: Exploring the Role of Online Health Information in Illness Experience. In Companion Publication of the 2022 Conference on Computer Supported Cooperative Work and Social Computing (pp. 263-266).

This workshop aims to explore the different methods researchers have used to understand online information-seeking journeys and to identify how the internet is, or can be, used to help users make sense of, and give meaning to, their experiences. Through convening a methodologically diverse set of researchers, we hope to generate a foundation and cohesive field of inquiry and community within HCI.

‘I figured her feeling a litle bit bad was worth it to not spread that kind of hate’: Exploring how UK families discuss and challenge misinformation

Scott, L., Coventry, L., Cecchinato, M., & Warner, M. (2023). “I figured her feeling a litle bit bad was worth it to not spread that kind of hate”: Exploring how UK families discuss and challenge misinformation. In Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems

We identify several barriers individuals face when challenging misinformed family members, such as the misinformed person’s personality and the extent that preconceptions infuence beliefs. We also fnd individuals developing strategies to overcome these barriers, and to cope with difculties that arise through these conversations.

Evaluating the Effects of Culture and Relationship Strength on Misinformation Challenging Behaviours Within the UK

Scott, L., E. Cecchinato, M., Coventry, L., & Warner, M. (2023, August). Evaluating the Effects of Culture and Relationship Strength on Misinformation Challenging Behaviours Within the UK. In IFIP Conference on Human-Computer Interaction (pp. 429-438). Cham: Springer Nature Switzerland.

Through an online survey, we exposed multi () and mono-cultural () participants to misinformation scenarios involving close and weak relationship ties, to understand how tie strength and cultural background affects people’s behavioural responses. We found that both the tie strength between the misinformed individual and the cultural background of the challenger has a significant effect on the barriers that individuals foresee affecting their discussions about misinformation, and in the misinformed challenging behaviours. Our findings offer new insights into how relationship tie strength and culture affect misinformation challenging.

Conceal or reveal: (non)disclosure choices in online information sharing

Yefim Shulman, Agnieszka Kitkowska, Mark Warner & Joachim Meyer (29 Jan 2024): Conceal or reveal: (non)disclosure choices in online information sharing, Behaviour & Information Technology, DOI: 10.1080/0144929X.2024.2304613

We conducted an online experiment (N = 462) to explore the effects of feedback properties and individual characteristics on online information sharing in two contexts (social and socioeconomic) where personal ratings are essential. We allowed users to conceal their personal rating if it dropped below a threshold. The context was the primary determinant of the threshold users chose. Control availability and feedback content triggered additional considerations and caused some users to change their (non)disclosure choices. However, many users relied on their priors (experience, assumptions) rather than on new information. Our findings show how people may fail to identify the impact of nondisclosure, which may signal undesirable information to others. These findings challenge the reliance on holding users solely accountable for their ‘informedness’ vis-à-vis disclosure of their personal information.

“Shifting Norms and Value Conflicts: Exploring the Effects of HIV Status Disclosure Fields in Sex-Social Apps

Warner, M., Gibbs, J. & Blandford, A. Shifting Norms and Value Conflicts: Exploring the Effects of HIV Status Disclosure Fields in Sex-Social Apps. Arch Sex Behav 53, 1575–1589 (2024).

We interviewed MSM living with HIV and those who self-reported being HIV-negative () in the UK and applied a hierarchical model of motivation to interpret our data. We found conflicting motivations for disclosure and point to HIV status disclosure fields having shifted disclosure norms, limiting their perceived optionality. Moreover, the pairwise and location-aware nature of these apps fails to support narrative forms of disclosure, reducing motivation. We highlight an opportunity to support users in disclosing by linking apps more explicitly to the social narratives developed through public health campaigns. This could reduce the required effort to explain “the science” behind different treatment and prevention options and promote a more consistent narrative.

Women’s use of online health and social media resources to make sense of their polycystic ovary syndrome (PCOS) diagnosis: a qualitative study

Gomula, J., Warner, M. & Blandford, A. Women’s use of online health and social media resources to make sense of their polycystic ovary syndrome (PCOS) diagnosis: a qualitative study. BMC Women's Health 24, 157 (2024). https://doi.org/10.1186/s12905-024-02993-5

We highlight the information needs and information-seeking strategies women use to make sense of how PCOS affects them, to gain emotional support, and to help them find an effective treatment. We also show how women with PCOS use online health and social media resources to compare themselves to women they view as “normal” and other women with PCOS, to find their sense of “normal for me” along a spectrum of this disorder.

Exploring Privacy Practices of Female mHealth Apps in a Post-Roe World

Malki, L. M., Kaleva, I., Patel, D., Warner, M., & Abu-Salma, R. (2024, May). Exploring Privacy Practices of Female mHealth Apps in a Post-Roe World. In Proceedings of the CHI Conference on Human Factors in Computing Systems (pp. 1-24).

We investigated the privacy practices of 20 popular female mHealth apps, combining a thematic analysis of Data safety sections and privacy policies with a privacy-focused usability inspection. Our findings revealed problematic practices, including inconsistencies across privacy policy content and privacy-related app features, flawed consent and data deletion mechanisms, and covert gathering of sensitive

talks

Forensic Case Study

This talk presents a real-world digital forensic case study involving the decoding of a mobile device that was used as a detonator for an explosive device hidden within a printer, found in transit to the United States in 2010.

teaching