INTUIT Study (version 1.0)
Research type
Research Study
Full title
Interaction Design for Trusted Sharing of Personal Health Data to Live Well with HIV (INTUIT)
IRAS ID
271133
Contact name
Abigail Durrant
Contact email
Sponsor organisation
Newcastle upon Tyne Hospitals NHS Foundation Trust
Clinicaltrials.gov Identifier
Z6364106/2019/07/150, UCL Data Protection Registration Number
Duration of Study in the UK
0 years, 2 months, 24 days
Research summary
People with long term conditions (LTCs) often collect personal health data, such as medication adherence, side effects, sleep quality and mood. These patient-generated data (PGData) have the potential to improve self-management of a condition and shared with health care providers (HCP) can improve the care received. Some people also share PGData with others who have the same LTC, e.g., via online forums. INTUIT is a qualitative observational study that will explore the Trust, Identity, Privacy and Security (TIPS) concerns that people living with HIV, and those with other stigmatised long term conditions (LTCs), have about sharing their PGData.
We will recruit approximately 66 people living with HIV who access care, and 56 healthcare and public health professionals engaging in the provision of care and surveillance activities, in London and Newcastle Upon Tyne. We will utilise a number of qualitative methods including:
1. ethnographic observations of clinical consultations and routine activities of the HIV surveillance team at Public Health England;
2. semi-structured interviews with people who are living with HIV who access NHS HIV care and healthcare professionals working in two HIV outpatient clinics; and
3. design-based co-creation workshops (focus groups) with people living with HIV and healthcare professionals
By identifying Trust, Identity, Privacy and Security concerns of these groups, and evaluating design concepts for removing barriers to collecting and sharing PGData, we aim to improve the health, well-being and social outcomes for people living with HIV and those with other stigmatised longterm conditions, and also to contribute to public health surveillance. The work is co-created by members of the research population, members of the public and other key partners and stakeholders. This research is funded by the Engineering and Physical Sciences Research Council.
REC name
Yorkshire & The Humber - Sheffield Research Ethics Committee
REC reference
19/YH/0417
Date of REC Opinion
3 Dec 2019
REC opinion
Favourable Opinion