Patient and Public Involvement (PPI): Showcasing the benefit of involving people with chronic respiratory diseases (CRD) in their own care during the COVID-19 pandemic in India

Aim: To conduct an early example of PPI and explore the experiences of people living with CRD regarding physical activity during the pandemic and preferences for future Pulmonary Rehabilitation (PR).Methods: We conducted telephone-based PPI calls with CRD patients who had previously participated in PR in the last two years. Field notes were taken on the impact of the pandemic on their respiratory healthcare and their vision for PR delivery in the post-pandemic period.Results: Calls were made to 23 patients (18 males; aged73±7 years). None of the patients had worsening of symptoms, exacerbations, or hospitalizations during the pandemic (May-June 2020). Most patients could not exercise outdoors due to social distancing guidelines. Those who continued walking outdoors experienced breathing discomfort from wearing a face mask. Generally, patients adapted to indoor exercises like Yoga, Pranayama and resistance training; requiring less space. Some patients living away from family experienced severe social isolation, with only a few able to adapt to digital technology for clinical consultations and connecting with friends/family. When discussing PR, some patients were concerned about using public transport, close contact with other people during the sessions, location of PR centres in the high risk COVID-19 containment zones, and insistence from family members to stay indoors. Only few patients disclosed feeling comfortable with centre-based PR. Patients suggested digital PR but expressed the need for support with technology.Conclusion: Our PPI highlighted the need for utilizing remotely monitored PR and inclusion of effective indoor exercises. Conducting PPI in developing and delivering patient-centric research in India will be a key to ensure effective continuum of optimum care for CRD patients during and after the pandemic. With our exemplar of informing suitable PR during and after the COVID-19 pandemic, PPI needs further advocating across India and allows rapid patient-led contributions to research and clinical services. Implementation Science/Service Development Research Ideas on Respiratory Conditions and Tobacco Dependency Abstract Declaration of Interest Declaration of interest: N/AFunding: This research was funded by the National Institute for Health Research (NIHR) (17/63/20) using UK aid from the UK Government to support global health research. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the UK Department of Health and Social Care References and Clinical Trial Registry Information