Communities of Practice as a Method for Public Involvement in Data Intensive Health Research

Patient and Public Involvement and Engagement (PPIE) describes a diverse set of practices that all aim to involve and engage people with lived experience in research, especially in the field of health. In the United Kingdom, such efforts have become a key aspect in publicly funded health and social care research. Successfully facilitating these PPIE efforts can be far from trivial, and requires acquiring skills and receiving appropriate training, which often is not yet part of curricula. This is particularly the case when concerning complex topics such as data intensive health research like artificial intelligence or dealing with diverse health conditions, such as multiple long-term conditions (sometimes called “co-morbidities”). Here, we present how we facilitated a community of practice that provided a learning environment for a diverse set of contributors - including patients, carers, clinicians, early-career researchers and PPIE experts. We describe the strategies employed to facilitate community interactions, highlighting the benefits for different contributors and the broader impact on the community- particularly in enhancing sustained, meaningful engagement between researchers and patients. Finally, we describe how such an approach could be replicated in different settings.