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Table 1 Search terms and general inclusion/exclusion criteria for published and unpublished (Grey) literature search

From: ‘Practical’ resources to support patient and family engagement in healthcare decisions: a scoping review

Published literature Grey (Unpublished) literature
Search terms used Search terms used
Applying ‘patient engagement’, ‘patient involvement’, ‘patient participation’ to those below: Applying ‘patient engagement’, ‘patient involvement’, ‘patient participation’ initially followed with ‘healthcare’, ‘decision making’, advisory committees’, and other terms pertaining to more specific engagement approaches, education/training, tools, resources, and infrastructure supports and evaluation considerations.
 • ’knowledge and skills…’
 • ‘design, delivery and/or evaluation processes.
  •‘…readiness for meaningful engagement’.
 • ‘Process and impact of patient engagement’. Also applied terms to specific countries known for patient/public engagement strategies.
 • ‘…resources (e.g. tools), needed by patients, providers, staff and leaders for effective patient engagement/involvement/ participation Australia
United Kingdom and rest of Europe
United States
 • ‘…preparation (e.g. education) needed by all stakeholders….’
 • ‘support (e.g. infrastructure) needed by everyone for ….’
 • ‘…in patient-centered system redesign; …to build capacity; …to “pilot” a resource kit; …evaluate the impact’
 • ‘Patient engagement/involvement/ participation resource kit’
 • ‘…best practices…validated tools…proven approaches’
 • ‘Recruit patients…’
 • ‘…spectrum or level of engagement…ready for successful engagement’
 • ‘…knowledge and skills needed
 • ‘…engagement at different levels within the organization (governance, to program-based planning and evaluation)
 • ‘…collaboration and partnering…’
 • ‘…organizational policies and practices…’
 • ‘…resources…’
 • ‘…capacity…’
Inclusion criteria for articles Inclusion criteria of literature
 • From 1995-2010 • From 1995-2010
 • Written in English • Written in English
 • Abstracts containing one or more of the key search terms or areas as identified in the research proposal. • Contains one or more of the key engagement-related and healthcare terms or areas.
 • Studies that refer to the involvement of patients at the program or governance levels • From United States, Canada, Australia, and Europe (with special emphasis on United Kingdom).
Exclusion criteria of articles Exclusion criteria of literature
 • Incorporate public or consumer engagement in areas outside of healthcare. • Incorporates public or citizen engagement or similar areas rather than patient engagement, and in areas outside of health.
 • Refer to involvement of the patients outside of the governance or program level. • Refers to the involvement of the patients outside of the governance/program level.
 • Involve patients in their own treatment and care aspects or in personal healthcare decision making.