Title: NIHR Global Health Research Group on Respiratory Rehabilitation – (Global RECHARGE) at The University of Leicester.
Funder: Department of Health and Social Care

Abstract: 1) Our objective is to develop an international research collaborative to further develop PR in the field of global health, this will provide the practical and research environment required to foster high quality applied research for measurable health, societal and economic impact. Our proposal aligns with the UoL’s “Discovery-led and Discovery-enabled International strategy (2016-20)” which places emphasis on the development of long term international relationships with the aim of transforming people’s lives through the intellectual and practical impact of such relationships. The proposal will extend and enhance UoL’s existing partnerships (e.g. from EU H2020 FRESH AIR programme) and also establish new relationships in regions where rehabilitation provides a low cost solution to the increasing burden of chronic lung disease. The overarching objective of the proposal is to improve health, well-being and economic productivity for patients suffering with chronic, disabling lung diseases in LMICs through the co-establishment of effective and accessible PR programmes in partner countries, providing an equitable collaborative environment to collaborate to develop multidisciplinary research capacity. The clinical and health economic benefits of exercise based rehabilitation in chronic lung disease have been unequivocally established in the developed world, both in published clinical trials and in large scale audit series of real-life clinical practice (1). However, clinical PR services are not available in most LMICs despite the high prevalence of chronic lung diseases due to lung infection (e.g. TB), tobacco consumption and indoor and outdoor pollution. 2) The Centre for Exercise and Rehabilitation Science, part of the NIHR Leicester BRC is a world leading academic centre in cardiopulmonary rehabilitation science and clinical practice with expertise in development and evaluation of interventions, collaborative research with international partners and strong links to national and international quality setting/benchmarking • The centre has a track record of delivering high impact clinical trials of exercise based interventions in chronic lung disease embedded in real-life clinical practice. Furthermore the team at CERS have led the development of alternative modes of delivering rehabilitation that can be time and location independent which is of great important in LMIC settings (2,3). • We are experienced in providing support and mentorship in PR research and policy to collaborating academics and institutions in partner LMICs. Members of CERS have been influential in the development of national and international rehabilitation guidelines and health policy in the UK and internationally (4,5,6,7). The applicants have been closely involved in the development of the ATS/ERS PR policy document (SS) (8) which sets out the steps required to enhance referral and uptake of PR internationally. • The applicants have been at the heart of the quality agenda in pulmonary rehabilitation service development in the UK through the establishment of quality standards for PR (SS, MS), the delivery of national scale auditing of PR services and outcomes against these standards as part of the National Clinical Audit for COPD (MS clinical lead) and the implementation of a QI and accreditation strategy for PR through the British Thoracic Society (SS clinical lead). The national PR audit with over 7,000 individual cases, the largest single database held in the world. This resource has already resulted in a small number of high impact publications (9,10). • The applicants have developed core datasets/quality indicators for PR and piloted site assessment visits for PR accreditation incorporating metrics relating to staff skill mix, service leadership and patient involvement. The centre is therefore well placed to develop the necessary datasets and systems for internationally standardised benchmarking of rehabilitation services as envisaged in the project. Funding from the project will support the database development and hosting in CERS and development of data management skills in the LMICs. The Leicester NIHR BRC provides the necessary statistical and data management support to coordinate and curate data collection. Members of the BRC and CERS have extensive experience of managing and exploiting large datasets for academic and quality improvement purposes. The University Hospitals of Leicester NHS Trust have agreed to match fund the PI time on the application. UoL have agreed to support the project as outlined in the justification of costs. 3) The proposed work builds on a number of collaborations: • The successful H2020 FRESH AIR EU funded project, aiming to implement cost effective interventions in LMICs. SS and RJ have led implementation projects as part of the H2020 project in Vietnam, Crete and Kyrgyzstan. As a direct consequence of this, a great deal of learning and reflection has led us to agree a different approach with our partner LMICs, acknowledging the opportunity to simultaneously develop research capacity. • SS and RJ have implemented PR in Uganda funded by the MRC. This activity has led to the current international collaboration that has emerged after a number of scientific meetings and conferences where the need for PR was recognised. • PH and MB have existing collaborators in Kyrgyzstan at the National TB Hospital with a focus on drug resistant TB (approximately 25% of cases). • The Edinburgh RESPIRE Global Health Unit has the objective of improving respiratory health in a number of LMIC’s and the RECHARGE Group will complement these activities. We have supported their project in Bangladesh to pilot a PR programme, we have trained their staff to deliver a structured PR programme. The team in Bangladesh would like to contribute to our database. We with the RESPIRE team believe that our projects complement research in this field and will strengthen research capacity. • UCL (JH) have some experience in LMICs (Nepal and Peru, MRC funding) case finding and exacerbation management and we would engage with them to explore opportunities to reach out to these countries to develop similar PR based projects. Post funding we will continue to support partners with work force training in collaboration with the BTS as new knowledge becomes available. By addressing workforce training as part of our bid we believe that this increases the likelihood of a sustainable project. The international database will be supported locally post funding and will create a community of LMICs with a research interest in PR. We would of course seek additional funding opportunities to develop research capacity within these institutions. 4) We intend to engage with collaborators and partners according to the principles of the KFPE ‘A guide for transboundary research partnership’ in the following ways: (11) • Clinical and societal benefits of successful PR in chronic respiratory disease are highly dependent on referrer, provider and user engagement and we therefore envisage collaborators from partner countries driving the development of research questions relevant to local health, social and cultural circumstances. We will be advised locally with respect to the stakeholders, but would propose to include a range of clinicians, referrers and policy makers/funders. • We will include potential participants and their families/carers. We would ensure fairness of representation and opportunity to engage in the meetings. Partners will share PPI procedures to ensure end users and their families are engaged. • We may also involve technical staff/software developers if seen as a possible solution. If we were to pursue this option we would consider that patient representation was crucial. • The role of the host institution and UK based applicants will be to provide peer review, academic and clinical mentorship and support staff training for local teams in partner countries.

Lay abstract: Chronic lung disease is associated with cigarette smoking, fumes from cooking on open stoves and air pollution. Chronic lung disease is rife across the developing world, not surprisingly, the disease affects the most vulnerable in society. The burden of the disability is profound in low and middle income countries (LMICs) as people are unable to work from a younger age, compared with high income countries. Sufferers are frequently disabled by their breathlessness. As a result, the individual experiences a reduced exercise capacity, poor quality of life and can become depressed, socially isolated and unable to work. The disease is characterised by sudden flare-ups known as ‘acute exacerbations,’ when symptoms are severe and the level of disability increases. Medication is expensive and often unavailable, and furthermore does not reverse the profound disability caused by the lung disease. Pulmonary rehabilitation (PR) is a low cost, high impact intervention that reverses the disability associated with lung disease, and is supported by the highest level of research evidence. PR brings together health professionals from many disciplines offering supervised exercise training and disease education, supporting people to manage their own disease. However PR is not available in our partner LMICs. Our Group will fill this gap and address this unmet need. The overarching aim of this work is to develop a PR programme that is deliverable and sustainable, but also offers a real opportunity to develop research capacity in LMICs. The project builds on partnership experience of implementing PR in Vietnam, Kyrgyzstan, Uganda and Crete and integrates new partners in India and Sri Lanka, who have identified this as an urgent health need. We will take this work forward by learning more about PR in global health, and in developing research capacity globally. Indeed our new partners have proposed a number of research questions they would like to develop as part of the team. RECHARGE will bring together health professionals from many disciplines to carry out three work packages (WPs), supported by strong project management: WP1. To develop a culturally acceptable PR intervention that will reduce the disability associated with chronic lung disease (including TB). This addresses an unmet need and would make a significant and sustainable contribution to the wellbeing of individuals with chronic lung disease. In parallel, we will work with healthcare professionals to ensure that they are able to deliver high quality PR programmes. The British Thoracic Society (BTS) have agreed for their online and face to face training programmes to be used as a potential framework to develop a training programme for staff in LMICs. WP2. To develop an international, robust and secure PR dataset with contributions from our existing and new partners. This database will ensure a common way to record information about lung disease and rehabilitation, and provide a rich resource for future research projects. WP3. WPs 1 and 2 will form the basis of WP3: research capacity development. Training will be delivered locally to help health professionals to deliver PR effectively, develop data management and other health research skills and make it possible to carry out international comparisons with our partner LMICs countries. As a team we comprise international leaders in the field with a strong track record and believe we have the passion and enthusiasm to deliver a valuable project.

Research activity codes: 5.7 PHYSICAL;6.7 PHYSICAL;6.9 RESOURCES AND INFRASTRUCTURE (TREATMENT EVALUATION);7.4 RESOURCES AND INFRASTRUCTURE (DISEASE MANAGEMENT)
Health categories: RESPIRATORY