Title: Developing NHS services to meet the needs of an ageing population of people with HIV
Funder: Department of Health (England)

Abstract: Workpackage 1 - Intervention development i) Scoping review of chronic care models (months 1-9) We will conduct a scoping review [60,61] to produce a profile of the existing literature on the application of theoretical models to the management of long-term illnesses. A scoping review is used to examine the extent, nature and range of research in a particular area without an in depth analysis of the literature or quality assessment [61]. Data sources will include electronic databases (e.g. Pubmed, MEDLINE, Cochrane Database of Systematic Reviews) and references of selected articles. The review will be carried out by a research fellow experienced in conducting systematic literature reviews. Studies will be included if they applied a theoretical framework to the care of a long-term illness and include information on patient health, experience or satisfaction with care, quality of care, impact on hospital services or primary care or costs. Data will be extracted and summarised. The evidence for the effectiveness and efficiency of each of the models identified will be scrutinised. The feasibility of applying components of identified models to the care of HIV positive patients will be will be considered by the SG and AG and the results used to identify a relevant framework to guide the development of the new service model. ii) Literature search of HIV non-disclosure from an international perspective (months 1-3) iii) Discussions to inform model development (months 1-9) The SG will determine how the findings of our preparatory research, scoping review and Workstream 1 of the PG will inform the new model of care. iv) Work to inform the Operational Research Modelling (months 1-12) The new approach to be developed within the PG will be patient focused, informed by experience-based design, our preparatory research into patient preferences and clinical need. In order to develop a model that can be realistically delivered, we need to know what the constraints on delivering the model are, and what is feasible. This requires an awareness of demand, capacity requirements and the availability and other constraints on resources. Demand is determined by several factors, including population needs, changes in demographics and patient choice; capacity requirements relate to the staff, clinic space and other resources necessary to deliver the model to a satisfactory standard. Availability (of for instance the number of GPs with interest in HIV or HIV specialist nurses) is considered separately from overall budgetary constraints to reflect non-financial barriers to increasing capacity. Led by Utley, we will conduct work to inform the operational modelling to be carried out as part of the future Programme Grant. This will include: - Familiarisation with existing data sources and their limitations, the clinical context across HIV specialist care, primary care and various relevant specialities and models of care that are already in place - Understanding the potential constraints (e.g. environmental, financial and workforce constraints) in order to determine what is permissible and what pathways patients could take - Examining existing patterns of referral and study databases - Determining whether, based on patient preference data from our ongoing preparatory research, we need to allow for patient choice in the model(s) of care delivered, since a ‘one size fits all’ approach may not be acceptable. The data sought will likely include the following: 1. Those that could be used to inform estimates and projections of demand: i) current and projected prevalence levels by sociodemographic, geographic and other factors (from Public Health England HIV prevalence data, HIV specific co-morbidity data from the UK CHIC study and local clinic databases). ii) and/or incidence rates for considered morbidities among the HIV+ population (utilising UK CHIC, EuroSIDA/D.A.D, and clinic databases (Appendix 4 - Glossary)) as well as the general population (using GP morbidity statistics) augmented by ongoing research on relative incidence among HIV+ people (for example the POPPY study). The statistician within the Programme Development Grant (Prof Caroline Sabin) is also the statistician for UK CHIC and the POPPY study and one of the statistical team from EuroSIDA and D.A.D study which will ensure that we have optimal access to these datasets to inform this work. iii) historical service utilisation data, including underlying trends, seasonal trends and levels of day-to-day variation can be obtained from each clinic database system and further informed by the health care utilisation workstream within the ongoing POPPY study (led by Martin Fisher, Vanessa Cooper and Nicky Perry). 2. Those that could be used to inform the translation of estimates of demand to estimates of capacity requirements: - typical clinical appointment durations - mean number and distribution of clinic appointments per episode - and/or ratio of new to follow up appointments - current referral rates to other community or acute services These can easily be determined from clinic databases and the POPPY healthcare utilisation data (as described above). Workpackage 2 - Pilot and feasibility work The new model of care will be informed by the scoping review (described above), our preparatory research and additional studies exploring missed opportunities for care and patients’ experiences of services. During the PDG, we will design measures and pilot these research approaches in HIV clinics. i) Identifying missed opportunities for care (months 1-10) We propose to identify missed opportunities in the care of HIV positive patients using a retrospective design, based on the approach used by the National Confidential Enquiry into Patient Outcome and Death, whereby the care of patients who have experienced a serious but potentially preventable event (drug-drug interaction, myocardial infarction, stroke, chronic kidney disease, fracture, suicide attempt, hospital admission and death) will be scrutinized by an expert panel to identify clinical, organisational and patient-related factors that may be amenable to intervention [62]. We will design the measures (clinical questionnaires, organisational questionnaires and data extraction forms) for this study. The ways in which HIV care and the care of co-morbidities are provided and the ways in which data is coded and stored may differ between sites. In order to pilot measures and examine the feasibility of this approach across geographical locations, we will pilot these methods with a small number of cases across three study sites. Data will be collected for 3 patients for each of the 8 events from each site (72 patients overall). An expert panel will be recruited to review 8 of the cases (1 case for each event) to assess the quality of care received and identify ways in which each event could have been prevented or managed differently to optimise care. This pilot study will establish the feasibility of this approach prior to the PG. ii) Experience-based co-design (months 1-12) Experience-based co-design (EBCD) is a method for improving user experiences of services. Service improvements made as a result of EBCD have been wide ranging, including changes to care pathways, patient information, provision of social support, improved continuity of care, improved communication, skill development, staff training, the design of new clinics and changes to physical spaces [36-38]. We intend to use this method across 3 clinics where care may differ, to inform targets for intervention to improve patient experience. This method has not previously been used in the context of HIV. Led by Robert, we will pilot the method in Brighton both to ascertain the feasibility and acceptability of using this method to develop HIV services and to develop our measures and methods to be used during the PG. Interview schedules will be developed and reviewed by the SG and advisory group (AG).HIV positive patients aged 16 years and above will be recruited from HIV clinics. We will purposively sample patients who have experienced significant preventable events, those who have co-morbidities and those who do not, and a balance of good and bad experiences (total 25 patients). Health care professionals will be recruited from roles across the patient pathway to give a wide range of views (n=15). Discovery interviews [33,63], conducted by an experienced researcher, will explore each patient’s journey through the care of HIV and any co-morbid illness, including experiences of GP/HIV/other specialist care and social care services. The interviews will be filmed or digitally audio-recorded, depending on patient preference. Each interview will last approximately 1 hour. The films/recordings of the interviews will be edited into a series of short clips and presented as a film (either a film of the raw recordings or involving actors presenting the original dialogue). Patients and staff who took part in the interviews will be invited to feedback events where the film will be shown, findings discussed and priority areas to be addressed will be identified. This pilot study will establish the acceptability of the approach to HIV positive patients, including the willingness of patients to be filmed, and any adaptations to traditional approach such as using actors or shadowing to protect confidentiality. Workpackage 3 – Work to inform the design of the evaluative study ii) Work to inform the design of the evaluative study (months 4-12) We will develop the design of the feasibility and evaluative trials (e.g. simple before and after design, stepped wedge design or cluster randomised trial), and engage with a Clinical Trials Unit. This will include discussion of our primary and secondary outcomes and selection of outcome measures. We will also develop the design of the economic evaluation, including any modelling work, and explore ways in which economic modelling could link with the operational research modelling described in Workpackage 3.


Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: INFECTION