Research process

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:

Understand how personal information for self-managing HIV is collected, reflected upon, and shared with others, including those living with the condition, healthcare professionals, public health professionals, and private organisations;

Identify perceived trust barriers and ethical issues associated with identity, privacy and security, for sharing personal information as data;

Envision design and evaluate new tools that empower people to use their data for self-managing HIV and other long-term conditions, in order to live and age well.

Research studies

The INTUIT team have worked with research participants between 2018 and 2022 to conduct real-world studies across the UK that explore the barriers and opportunities for people living with HIV to track and record their own health information, and what it means to share this with others, to support the self-management of HIV, and for self-care.

We have investigated the sharing of such personal health information in three contexts:

  • Within the HIV Community – people living with HIV sharing personal health information with others who also live with this condition (peer-to-peer sharing);
  • Between Service Users and Healthcare Providers – people with HIV sharing personal health information with care providers, such as an HIV clinician, nurse, psychologist, health advisor, GP, pharmacist, at routine consultations;
  • With Private Organisations or for Public Health Surveillance – people with HIV sharing personal information with others (such as companies, charities) to enable or facilitate service use or to contribute to ‘big data’ and the aggregation (collection) of information at scale.

Study participants have been recruited via: Africa Advocacy Foundation, London; Brigstowe, Bristol; Blue Sky Trust (BST), Newcastle, Carlisle; George House Trust, Manchester; Terrence Higgins Trust (THT), national; UK-CAB, national, and through social media networks. For the clinical studies, service users and clinicians have been recruited through the NHS: Central and North West London (CNWL) NHS Foundation Trust; and The Newcastle Hospitals (NUTH) NHS Foundation Trust; with approval from the Health Research Authority (HRA) and Health and Care Research Wales (HCRW), IRAS project ID 271133 and Research Ethics Committee (REC) reference 19/YH/0417.

The team have in parallel conducted desk-based reviews and information searches to learn what studies have previously been conducted and written about. By doing this, the team could identify how to build on existing evidence and address gaps in knowledge.

Please find more details about our studies at the links below.