INTUIT Interaction design for trusted sharing of personal health data to live well with HIV

Digital Health

Abstract

EPSRC funded project aiming to develop a deeper understanding of the barriers and opportunities of online communication for supporting the self-management of HIV as a long-term condition.

Method

This research programme is co-created in partnership with five UK Universities plus a number of HIV organisations, advocacy groups, to ensure that it is centrally informed by experts in the lived experience of HIV.

Takeaways

The project aims to address challenges for the trusted sharing of personal health data, to live well with HIV, and to design supportive digital tools

‘INTUIT: Interaction Design for Trusted Sharing of Personal Health Data to Live Well with HIV’, is a project funded by the EPSRC (Engineering and Physical Sciences Research Council) aiming to develop a deeper understanding of the barriers and opportunities of online communication for supporting the self-management of HIV as a long-term condition.

INTUIT brings together experts in the lived experience of HIV, HIV Medicine, Public Health, Human Computer Interaction, Design, Health Psychology, Health Informatics and Applied Ethics to:

  • Envision, develop and evaluate new tools that empower people to use their personal information for self-managing HIV, in order to live and age well;
  • Understand what it means to share this information with others, including healthcare providers, communities, and private organisations;
  • Identify ethical issues associated with issues of Trust, Identity, Privacy and Security related to sharing information and managing stigma and well-being. This will help us to develop responsible processes for conducting technology research.

Whilst our work plan focuses on people living with HIV, it ensures that insights from the research can be of value for understanding barriers to sharing personal information when living with other potentially stigmatised long-term conditions, such as mental health conditions.

The INTUIT programme is fundamentally ‘co-created’. This means that our research is collaboratively defined, conducted, and made sense of, between the University partners, partnering organisations and stakeholders. Our team includes: people living with HIV and their advocates; academic clinicians; experts in public health surveillance; Internet ethicists; and socially responsible innovators and ‘digital disruptors’ in design and cybersecurity who envision markets for new products and services.

These experts – and their affiliated organisations, groups, and institutions – understand the challenges related to the research, ensuring wide engagement and impact. The experts sit on a Strategic Advisory Board (SAB) for the project.

The INTUIT team will endeavour to create effective forums across the 30-month work programme for sharing multiple voices about the research.

For more information about the INTUIT project or to get in touch with the team, please contact the Principal Investigator by email: Abigail.Durrant@newcastle.ac.uk