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

Funder: EPSRC

 

Team: Abigail Durrant, Lynne Coventry, Elizabeth Sillence, Caroline Claisse, Kiersten Hay (Northumbria University); Sherma Tariq, Jo Gibbs, Karen Lloyds (UCL); Simone Stumpf, Adrian Bussone, Bakita Kasadha (City, University of London); Jon Bird (University of Bristol); Ewa Luger (University of Edinburgh); CNWL NHS Trust; Public Health England; National Aids Trust; Microsoft Research; Yoti; UK-CAB; Terrence Higgins Trust; INTEROPen.

 

Website: https://intuitproject.org/

 

Timeframe: 2018-2021

The value of using personal data, collected by individuals, for improving healthcare provision and the self-management of long-term conditions (LTCs) is increasingly recognised by healthcare providers and citizens. However, the communication of these data – and the inferences made about ‘health’ and ‘lifestyle’, are inextricably linked to concerns for managing trust, identity, privacy, and security (TIPS). Data sharing presents issues around personal privacy breaches, stigmatisation and discrimination. Through effective treatment, the Human Immunodeficiency Virus (HIV) has been transformed to a LTC with normal life expectancy, but remains highly stigmatised. The interdisciplinary INTUIT project seeks to identify and address fundamental TIPS challenges faced by those living with HIV in sharing self-generated data with care services, peer support networks, and private organisations. New digital tools are being developed to provide people with opportunity and choice for managing the trusted sharing of these with others. We envision innovative service propositions grounded in a new empirical understanding.

 

Our co-creative and inclusive design approach engages non-academic partners and stakeholders in defining, conducting, and analysing the research. This includes: the HIV peer community and their advocates; academic clinicians; public health surveillance experts; and commercial and not-for-profit innovators in healthcare and identity management. The project ensures that insights have transferability to other contexts including managing mental and sexual health conditions. The research informs ethically responsible digital innovation strategies for healthcare provision to enable all citizens to live and age well in society.

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Bussone, A., Hay, K., Stumpf, S. and Durrant, A. Exploring the Sensitivities of Researching People Living with HIV. Position paper at forthcoming ‘Sensitive HCI’ workshop. In Proceedings of 2019 ACM Conference of Human Factors in Computing Systems (CHI 2019), ACM.