PPIE guidelines and resources

This page lists external guidelines, frameworks, and patient advocacy groups referenced by the EBRAINS PPIE guideline. Use it to find further reading on Patient and Public Involvement and Engagement (PPIE) practice.

WHO

• WHO patient engagement
• Wit, M. de et al. (2019). Practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO). Aging Clinical and Experimental Research, 31(7), 905–915. https://doi.org/10.1007/s40520-019-01193-8

Canada

• Canadian Institutes of Health Research
• CIHR patient engagement
• Healthcare Excellence Canada’s patient engagement framework

NIHR (National Institute for Health and Care Research) — UK

• NCATS stakeholder glossary
• People in Research: public involvement
• NIHR patient and public involvement and engagement resource pack
• Cambridge BRC PPIE strategy 2022–2027
• Loughborough University PPIE guidance
• Public Involvement Impact Assessment Framework (PiiAF)

USA

• GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research

Australia

• NSQHS Partnering with Consumers Standard

Austria

• LBG (Ludwig Boltzmann Gesellschaft) — Practical PPIE Guide

Patient advocacy groups

• European Brain Council (EBC) — see also Deliverable D5.6, Report on patient involvement best practice
• European Federation of Neurological Associations (EFNA)
• European Rare Disease Research Alliance (ERDERA) — public and patient involvement and engagement overview
• James Lind Alliance
• PCORI glossary of patient-centred outcomes research terms