Protocol for a James Lind Alliance priority setting partnership to identify the most important research priorities addressing respiratory health disparities affecting the Black community in the UK

Introduction

Respiratory diseases affect millions of people in the UK, with a disproportionately high burden seen among many marginalised communities. They are the third leading cause of death in the UK and a major driver of morbidity, disability and healthcare service use. Many respiratory conditions cause debilitating symptoms and deterioration in patients’ health and quality of life over time, resulting in substantial increases in National Health Service (NHS) expenditure. Social inequalities, including occupational, housing and environmental disparities, have led to a disproportionate burden of respiratory disease among the Black community. For many Black people living in the UK, respiratory conditions have been under-recognised, misdiagnosed or inadequately treated, further contributing to disparities in health outcomes. Despite the need to address these urgent challenges, research in this area is fragmented and rarely informed by the views and opinions of those most affected. Research prioritisation provides a structured methodology to address this unmet need. The Equal Breath Priority Setting Partnership (PSP) aims to identify the 10 most urgent research priorities in respiratory health for people of Black heritage through meaningful collaboration with people with lived experience of respiratory disease, their caregivers and family members and the healthcare professionals caring for them.

Methods and analysis

The top 10 research priorities for the Equal Breath PSP will be established using the James Lind Alliance (JLA) method. A steering group comprising approximately 12 people from key stakeholder groups will first be assembled to guide the PSP. Once the context and scope of the PSP has been agreed, the first survey will be developed and disseminated among stakeholder communities to identify evidence uncertainties. Data analysis of the survey responses will create summary questions and critical appraisal of available evidence will verify which of these are evidence gaps. A longlist of approximately 50 summary questions derived from the first survey will be shared with stakeholders in a second shortlisting survey. The highest ranking questions from this survey will be taken into a workshop where the top 10 research priorities will be established through a consensus process.

Ethics and dissemination

This PSP employs the JLA methodology, which does not constitute research as defined by the Health Research Authority. Survey respondent data will be stored in accordance with UK General Data Protection Regulation by Asthma+Lung UK. The final 10 research priorities will be shared with funders, policymakers, professional bodies and relevant communities to inform future investment and promote equity in respiratory health.