Access to Inclusion Thinking Beyond Reasonable Adjustments

Abstract

Disabled public contributors continue to experience challenges with inclusion, despite inclusive patient and public involvement (PPI) being regarded as the gold standard in research practice and despite disabled PPI contributors often making up a significant proportion of all public contributors [1]. With the recent Disability Framework from the National Institute for Health and Care Research (NIHR), which commits to disability inclusion in health and healthcare research [1], it is timely to reflect on the current situation.

This article is written in the first person by Sandra Paget and Agata Pacho, who share their perspectives as a PPI contributor and an academic leading PPI, respectively. Sandra is an experienced reviewer for the NIHR and has collaborated with academics across the UK. Having lived with a rare neurological condition since early childhood, she founded the original Buckinghamshire Neurological Alliance and served on the Executive Committee of the National Neurological Alliance, representing Regional Neurological Alliances. In this article, Sandra reflects on instances where her ability and willingness to contribute to research were limited by accessibility barriers or a lack of adequate access. She argues that these barriers not only affect individual PPI activities but also have a long-term impact on healthcare services, making it harder for disabled people to live independently for longer. Agata, an Assistant Professor at the London School of Hygiene & Tropical Medicine (LSHTM), leads PPI for the NIHR Policy Research Unit in Policy Innovation and Evaluation (PIRU). Here, Agata discusses how the notion of reasonable adjustments may, in certain cases, be unhelpful or even counterproductive to fostering inclusivity within PPI. Instead, Agata suggests that embedding a duty of care into how PPI is conducted could be a more effective way to break down barriers and ensure greater accessibility for disabled contributors.

Sandra Paget: conceptualisation, writing–original draft, writing–review and editing. Agata Pacho: writing–review and editing, writing–original draft.

The authors have nothing to report.

The authors declare no conflicts of interest.