Health informatics to improve the health of homeless and marginalised populations
randomized controlled trial
mixed methods research
Public aspects of medicine
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AbstractBACKGROUND: Marginalised populations experience extremes of poor health due to a combination of poverty, social exclusion, addiction and multi-morbidity. Homeless people (one exemplar group) have a broad range of health problems and difficulties accessing services. Specialist services to support the coordination of homeless health care have been established. The use of electronic health records provides an opportunity to evaluate the success of these services and understand the needs of the populations better but there are important privacy issues which require engagement with patients and relevant services to explore views about use of data and information sharing. A specific example of an important health problem in homeless people is tuberculosis (TB). Because of the documented high levels of poor adherence to treatment, directly observed therapy (DOT) whereby each dose of treatment is observed by a healthcare professional, is recommended for homeless people and others in whom poor adherence is a concern. Advances in information and communication technology have enabled us to make use of Video Observed Therapy (VOT) on smartphones and is currently being evaluated in a NIHR-funded randomised controlled trial (RCT) in London, UK. The technology also has the potential to support the management of other conditions such as Hepatitis C in homeless populations. There is a paucity of evidence on the application of behavioural interventions like VOT to marginalised groups to understand what the critical drivers might be to support medication adherence in unsupported homeless populations. For this reason there is a need to understand patients’ and healthcare professionals’ views; firstly to explore the array of practical and ethical aspects of health informatics use but also to understand their contribution and relevance to homeless and marginalised groups to support implementation. AIM: to explore patients’ and healthcare professionals’ views of the use of health informatics approaches, like VOT to improve the health of homeless and marginalised populations. METHODS & RESULTS: In a previous VOT pilot in London (July 2012 to March 2013) to explore VOT as a flexible alternative to DOT in clinically and/or socially complex TB cases, findings from 17 patients show that 80% of patients returned their video clips and 86% of scheduled VOT doses were observed to have been taken. Semi-structured interviews with patients with multi-drug resistant tuberculosis receiving VOT in London (Oct 2013 to March 2014): Patients reported very high levels of satisfaction as illustrated by the following quotes: “I was getting tired of DOT. I thought I would be a lot freer to continue with my daily life—all that time and effort you’ve saved me—I didn’t need much convincing. With the DOT, it felt like...there was some kind of stigma and for that reason they are monitoring you. It felt like being a criminal.” “I wouldn't have felt comfortable just meeting a person online—I would have been like, ‘who's that person, I don't even know him?’ But I'm really pleased you came all the way to my house, to make me comfortable and show me what to do...and I took it from there and it was really good." Mixed methods research approaches to explore patient acceptability of VOT intervention: Building upon previous pilot work current mixed methods research explores patient attitudes and acceptability of VOT will involve administration of the EQ5D survey instrument (at 2 and 6 months into treatment) to capture impact of the VOT intervention on quality of life, patient satisfaction (using Likert scale); views on being asked to have treatment observed; to understand how VOT fits into patients’ lives and the effect of DOT/VOT on family, work and social life; to explore patient’s views on the levels of support available to them; identify technical difficulties with recording and submitting VOT clips. Semi-structured interviews and focus groups with patients, healthcare professionals, policy makers and commissioners: For patient groups who have completed treatment our purposive sampling will focus on identifying a heterogeneous group of patients across both DOT and VOT trial arms covering a range of levels of adherence. Data collection will focus on the following issues: (i) Interviews with individuals who have experienced VOT for tuberculosis will explore the mechanisms by which this affects positive outcomes; (ii) Interviews with individuals who were randomised to receive treatment via VOT and refused the offer of VOT for TB will seek to understand the drivers behind this refusal. (iii) Interviews with individuals who have experienced VOT for tuberculosis will explore other behavioural intervention options that may help them obtain goals; Interviews with healthcare workers who have experience of the delivery of VOT for tuberculosis will explore the mechanisms by which this affects positive outcomes. Interviews with national commissioners and clinical commissioning groups (CCGs) will explore views on the history and conceptualisation of the ‘problem’ of tuberculosis treatment in marginalised groups; an understanding of what solutions have been developed locally (identifying key practice principles), how they have been implemented, the costs associated with them and perceptions of how they are working in practice. CONCLUSIONS: Pilot data demonstrate that VOT was an acceptable and flexible alternative to standard DOT for a proportion of patients living far away from their treating clinic, for those working or studying, and for those with multi-drug resistant TB. We are currently conducting a multicentre, analyst-blinded, randomised, superiority study to compare the efficacy of VOT versus DOT in supporting adherence in patients with active tuberculosis. Collectively with qualitative investigation of patients’ and healthcare professionals’ experiences this will inform future design and assessment to support implementation of VOT interventions.