Targeting the Forgotten: How to empower patients in histopathology diagnostics

 

Nicolas Orsi and Angelene Berwick at 4D Path/the University of Leeds joined forces with patient advocates Graham Holland, and Brad Power to author an article about the importance of public and patient engagement in cutting-edge medical advances, including innovations in histopathology.

To date, studies on the acceptability of AI and related technologies have focused on the opinions of histopathologist end-users, while neglecting the views of the end-beneficiaries: patients. This mindset may partly reflect the clinical immaturity of these technologies and the fact that patients typically have very limited interactions with pathology services, as opposed to other clinical disciplines where there is a greater stakeholder oversight of public and patient involvement (PPI). Nevertheless, given the cross-sectional relevance of pathology and its system-critical impact on other clinical disciplines, such involvement is key.

In an ideal setting, PPI should be incorporated at all stages of research (such as grant applications, ethics review, publication), clinical evaluation, cost-to-benefit analyses, and clinical adoption. Each stage should provide opportunities for iterative feedback – a model that the UK, at least, is increasingly moving toward. Importantly, such an interactive, inclusive, and transparent system will build trust with both end-users and beneficiaries. And just as importantly, by giving patients a voice in cutting- edge medical advances, we ensure that the research/clinical adoption of these new technologies remain grounded in achieving a positive impact on patients and their advocates. Active, engaged, and educated patients get better outcomes – and so, regardless of whether institutions listen, patients should speak more.