City researchers on the quest to provide personal information sharing for people living with HIV
Dr Simone Stumpf, is a co-investigator on the ‘INTUIT: Interaction Design for Trusted Sharing of Personal Health Data to Live Well with HIV’ project, alongside researcher Adrian Bussone.
Dr Stumpf is a Senior Lecturer in the Centre for Human-Computer Interaction Design in the Department of Computer Science.
The research project, funded by the Engineering and Physical Sciences Research Council (EPSRC), aims to identify and address fundamental trust, identity, privacy and security (TIPS) challenges faced by those living with HIV in managing their health and interacting with care services, peer support networks, and private organisations.
In close collaboration with partners, including representatives from patients groups, leading charities, companies and national policy organisations, the project team will design and evaluate new online tools to provide people with HIV more opportunity and choice for managing how they share data they have created themselves with other people.
Dr Stumpf will be part of an inter-disciplinary team led by Northumbria University’s Dr Abigail Durrant, and working with colleagues at University of Bristol, University of Edinburgh and University College London.
Core non-academic partners include: Public Health England; National Aids Trust; Central North West London NHS Foundation Trust; Newcastle upon Tyne Hospitals NHS Foundation Trust; Microsoft Research; Yoti; experts in HIV medicine, health psychology, medical informatics; and HIV advocacy groups. The Terrence Higgins Trust will join in conducting studies on the project, and representatives from NHS Digital and INTEROPen will sit, alongside our other partners, on a Strategic Advisory Board to ensure that the work is fundamentally co-created by all the project’s stakeholders.
Dr Stumpf and Adrian Bussone are very excited to work on investigating the data sharing behaviour of people living with HIV with their community and peers, in order to develop better self-management technologies.
Their previous work has focused on what personal information people living with HIV would like to capture, their privacy concerns, and the role of this personal information in peer support, sense-making and self-management.
Dr Stumpf said:
HIV is a global issue affecting an estimated 36 million people worldwide. Effective self-management is extremely important in maintaining their health and well-being. Sharing data with their community is a much under-researched aspect in self-care and we look forward to working with a fantastic project team to tackle this challenging matter.