INTUIT: 'Interaction Design for Trusted Sharing of Personal Health Data to Live Well with HIV'

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As interactions with data become an increasingly inherent feature of everyday life, including through health management and lifestyle tracking, and as the diversity of users grows, it seems likely that citizens' concerns for Trust, Identity, Privacy and Security (TIPS) will continue to increase and evolve. Crucially, experiences related to breaches of personal privacy are particularly challenging for those living with potentially stigmatising conditions. Yet, the particular nature and extent of such challenges are only starting to be understood. The importance of quality of life and well-being for those living with long-term conditions (LTCs) is increasingly recognised by both healthcare providers and citizens, as is the potential for patient-generated (health-related) data to be used to improve healthcare provision and the management of such conditions. However, the communication of individuals' personal data about their 'health' and 'lifestyle', and the inferences that may be made from it, are inextricably linked to identity management. Therefore, the disclosure and processing of such data raises critical TIPS issues for those who may fear discrimination or experience stigma. This project seeks to identify and address fundamental TIPS challenges faced by those managing stigmatised LTCs in managing their health and interacting with care services, peer support networks, and private organisations. We will develop new tools providing people with opportunity and choice for managing the trusted sharing of their self-generated data with others. We will envision innovative service propositions that are grounded in a new empirical understanding of challenging but highly relevant contexts for sharing these data. Through effective treatment, the Human Immunodeficiency Virus (HIV) has been transformed to a LTC with normal life expectancy, but remains highly-stigmatised. HIV therefore provides a specific clinical and social context where sharing personal data presents significant design challenges related to addressing TIPS concerns and barriers.Our ambitious work programme brings together experts in the HIV sector, Public Health, Human Computer Interaction Design, Health Psychology, Health Informatics and Applied Ethics to: envision, develop and evaluate pioneering trusted new tools that empower individuals to use personal data for self-managing their condition, to live and age well with HIV; understand what it means to share these data with particular others, including healthcare providers, communities, and private organisations; and to identify ethical issues associated with TIPS for managing stigma and well-being. Whilst our work plan focuses on people living with HIV, it ensures that insights from studying this population has transferability to other stigmatised LTCs such as mental health conditions. Our participatory approach engages academic and non-academic partners and stakeholders in defining the research, in conducting studies, and making sense of the results. This includes: members of the HIV peer community and their advocates; academic clinicians; experts in public health surveillance and cybersecurity who understand TIPS challenges related to the research, and who can involve typically hard-to-reach groups who may or may not be in clinical care, ensuring wide engagement and subsequent impact. As such, the work plan is fundamentally co-created. Multiple perspectives are synthesised through research-through-design activities; design prototypes become a basis for exploring opportunities to understand, and innovate. Our aspiration is to deliver foundational understanding of TIPs concerns for stigmatised populations, and to enable the trusted sharing of data through the inclusive design and evaluation of new systems and services. This work will inform ethical frameworks and responsible digital innovation strategies for healthcare provision to enable all citizens to live and age well in society.