How to involve the public and patients in data-intensive research?

How to involve the public and patients in data-intensive research?

Patient and public involvement (PPI) in studies can improve their relevance and impact, and the NHS routinely collects a large quantity of patient data and uses it to answer researchable questions. Aberdeen Centre for Health Data Science (ACHDS) is part of a national network of experts known as the Network Data Lab (NDL) who analyse this routinely collected data to address local and national issues related to health and care. ACHDS is leading the development of an ecosystem to support patient data-driven analytics to improve health, and have held numerous consultations with PPI partners, health and social care providers to identify, prioritise and refine topics of analysis.

Guided by existing recommendations, we have drafted a plan for local PPI activities for this year, and we are establishing an ACHDS PPIE group as a part of this plan. Over the next 2.5 years we will involve and build up our network of clinicians, local authorities, patients and the public, their involvement ranging from consultations on data analysis/interpretation to co-creation of outputs. Our aim is to identify how best to involve PPI partners in data-intense health research.