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Healthcare professionals' perspectives on working with patient-generated data for supporting person-centred HIV care

Lookup NU author(s): Professor Abi DurrantORCiD, Dr Caroline ClaisseORCiD, Kelly Lloyd



This is the authors' accepted manuscript of a conference proceedings (inc. abstract) that has been published in its final definitive form by British HIV Association, 2024.

For re-use rights please refer to the publisher's terms and conditions.


BACKGROUND We report on a UK study with Healthcare Professionals (HCPs) providing routine adult HIV care, to understand their experiences of working with Patient-generated Data (PGData) including Patient Reported Outcome Measures (PROMs), with the aim to inform the design of tools (e.g. electronic patient questionnaires) for supporting Person-centred Care. METHOD Semi-structured (individual and group) interviews were conducted (March 2020 to October 2022) with 15 HCPs (5 men, 10 women) from multi-disciplinary teams at: a large London HIV outpatient clinic (A); an Infectious Diseases service in Northern England (B). Due to COVID-19, all but one interview took place online. 90-minute interviews were supported by persona-based scenarios and infographics, prompting participants' engagement with individual lived experiences. Transcribed audio-recordings were coded using Reflexive Thematic Analysis. Participants included: seven physicians; three psychologists; two nurses; health advisor; pharmacist; peer support worker. Two physicians, one nurse, and one psychologist at Clinic B participated in follow-up interviews focussing on PROMs. RESULTS Physicians needed to balance patient agendas with clinician agendas, highlighting the practical reality of time constraints for achieving this balance. Nurses and psychologists highlighted wider patient circumstances impacting personal information sharing, plus health inequities shaping access to internet-mediated tools. Post-pandemic, preference for in-person consultation was emphasised for good communication. The value of PROMs in HIV care was perceived in: facilitating face-to-face conversation with patients who struggle to articulate problems or discuss difficult topics; co-defining an agenda; helping both parties ask the right questions and acquire contextual information; tracking progress; helping meet BHIVA standards; capturing and evaluating experience of attending services; tailoring services. Differing use of PROMs at each clinic reflected geographical diversity and type of specialist providing the service. Perceived challenges of using PROMs for HIV care include: patients’ confidentiality concerns; questioning validity of PGData - honesty in self-reports, context of capture; time constraints for interpreting data; system interoperability for data processing and access by HCPs and patients. Design considerations include: visual presentation, for readability, discretion, accessibility; language formats; value of capturing information between consultations. CONCLUSION Interview findings evidence UK HIV Healthcare Professionals' perspectives on how PGData including PROMs may support Person-centred Care, plus considerations for designing supportive data collection tools.

Publication metadata

Author(s): Durrant AC, Claisse C, Lloyd K, Tariq S, Gibbs J

Publication type: Conference Proceedings (inc. Abstract)

Publication status: Published

Conference Name: British HIV Association (BHIVA) Conference

Year of Conference: 2024

Online publication date: 01/05/2024

Acceptance date: 18/03/2024

Date deposited: 07/05/2024

Publisher: British HIV Association


ePrints DOI: 10.57711/ahdr-ey82