Table 2.
Nonfinancial and financial compensation details.
| Document source and title | Nonfinancial compensation | Financial compensation | |||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Services or training opportunities | Provide meals | Gift carda | Acknowledgement on research outputs | Verbal thanks | In‐kind donation | Gift | Conference presentation opportunity | Coauthorship | Invitation to a special event | Honorary appointment | Coinvestigator/coapplicant on grant | Honoraria | Gift cardb | Salary | Stipend | Not specifiedc | |
| South London and Maudsley NHS Foundation Trust (SLaM)—A guide to joining the Involvement Register | x | ||||||||||||||||
| Patient Voices Network, BC Patient Safety & Quality Council—A guide to patient engagement | x | ||||||||||||||||
| Patient Commando—A patient perspective on compensation | x | x | x | ||||||||||||||
| NHS Birmingham Cross City Clinical Commissioning Group—Birmingham Cross City Clinical Commissioning Group Safeguarding Annual Report 2015/16 | |||||||||||||||||
| National Institute for Health Research, INVOLVE—Briefing notes for researchers: public involvement in NHS, public health and social care research | x | x | x | ||||||||||||||
| National Institute of Health Research, Mental Health Research Network and INVOLVE—Budgeting for involvement: Practical advice on budgeting for actively involving the public in research studies | x | x | x | x | x | x | x | x | x | ||||||||
| Canadian Venous Thromboembolism Research Network (CanVECTOR)—CanVECTOR Patient partners compensation policy | x | ||||||||||||||||
| The Canadian Donation and Transplantation Research Program (CDTRP)—CDTRP patient, family and donor partnership platform terms of reference | x | ||||||||||||||||
| National Institute for Health and Care Research—Centre for Engagement and Dissemination ‐ Recognition payments for public contributors | x | x | x | x | |||||||||||||
| Canadian Institutes of Health Research—Considerations when paying patient partners in research | x | x | x | x | x | x | |||||||||||
| Canadian Institutes of Health Research (CIHR)—Ethics guidance for developing partnerships with patients and researchers | x | x | x | x | |||||||||||||
| Clinical Trials Ontario—FAQ's | x | x | |||||||||||||||
| Patient Advisors Network—FAQs about being involved as a patient partner | x | x | x | x | x | ||||||||||||
| IMAGINE—Financial compensation policy fro patient representatives | x | ||||||||||||||||
| NHS England—Framework for Patient and Public Participation in Public Health Commissioning | x | x | x | x | |||||||||||||
| BC SUPPORT Unit—Fraser Centre Research Support Award in Patient‐Oriented Research | x | x | |||||||||||||||
| Richards—Guidance on authorship with and acknowledgement of patient partners in patient‐oriented research | x | x | |||||||||||||||
| National Institute for Health Research NIHR Greater Manchester Patient Safety Translational Research Centre (Greater Manchester PSTRC)—Guidance on payments and expenses for non‐ Executive lay‐members of Executive Management Board | x | x | |||||||||||||||
| CHILD‐BRIGHT—Guidelines for patient–partner compensation | x | x | |||||||||||||||
| CanChild, Kids brain health network, McMaster University—Guidelines for researchers to complete research with family/patient partners including the SECRET to success | x | x | x | ||||||||||||||
| ISPOR–ISPOR Code of Ethics 2017 (4th edition) | x | ||||||||||||||||
| BC Patient Safety and Quality Council–Mandate & terms of reference | x | ||||||||||||||||
| Aiyegbusi—Moving beyond project‐specific patient and public involvement in research | x | x | x | ||||||||||||||
| Canadian Institute for Health Information—Participating in a CIHI Project Patient Toolkit | x | x | |||||||||||||||
| CYSHCNet—Partnering with youth & families in research a standard of compensation for youth and family partners | x | x | x | x | |||||||||||||
| CYSHCNet Adult and Child Center for Outcomes Research and Delivery Science (ACCORDS)–Partnering with youth, families, & patients in research a standard of compensation for youth, family, and patient partners | x | x | x | x | x | ||||||||||||
| BC Mental Health and Substance Use Services (BCMHSUS)–Patient and family engagement framework | x | ||||||||||||||||
| BC Mental Health & Substance Use Services (BCMHSUS)—Patient and family partner handbook | x | x | |||||||||||||||
| National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care East of England–Patient and public involvement (PPI) in research handbook | x | x | x | x | x | x | |||||||||||
| Alberta SPOR SUPPORT Unit–Patient engagement in health research: a how‐to guide for patients | x | ||||||||||||||||
| Ontario SPOR SUPPORT Unit–Patient engagement in research: catalogue of organisations in Ontario | x | ||||||||||||||||
| Patvocates for Rising Tide Foundation–Patient involvement for applicants | x | ||||||||||||||||
| Caruncho—Patient‐oriented research in mental health: matching laboratory to life and beyond in Canada | x | ||||||||||||||||
| British Columbia Academic Health Science Network (BC AHSN)–Patient partner appreciation | x | x | x | x | x | ||||||||||||
| Newfoundland and Labrador's Support for People and Patient‐Oriented Research and Trials Unit–Patient partner appreciation–NL SUPPORT and quality of care NL guidelines | x | x | x | x | x | x | |||||||||||
| Alberta Strategy for Patient‐Oriented Research (SPOR) SUPPORT Unit (AbSPORU) and the Patient Engagement Platform Compensation Working Group—Patient partner appreciation guidelines: compensation in research | x | x | x | x | x | ||||||||||||
| SPOR Evidence Alliance—Patient partner appreciation policy and protocol | x | x | x | ||||||||||||||
| Maritime SPOR SUPPORT Unit (MSSU)—Patient partner compensation and reimbursement policy | x | x | x | ||||||||||||||
| Richards—Patient partner compensation in research and health care: the patient perspective on why and how | x | x | x | x | |||||||||||||
| Saskatchewan Centre for Patient‐Oriented Research (SCPOR)—Patient partner honoraria | x | ||||||||||||||||
| Patient Voices Network, BC Patient Safety & Quality Council—Patient Partner, Lung Health Innovation Knowledge Translation Project | x | ||||||||||||||||
| Richards—Patients as partners in research: how to talk about compensation with patient partners | x | x | x | x | x | ||||||||||||
| Hoens—Patients as partners in research: there is plenty of help for researcher | x | ||||||||||||||||
| Smith—Patients as research partners; how to value their perceptions, contribution and labour? | x | x | x | x | x | x | x | x | |||||||||
| BC Mental Health & Substance Use Services (BCMHSUS)—Paying patient and family partners at BC mental health and substance use services a playbook on compensation | x | x | x | x | |||||||||||||
| National Institute for Health and Care Research—Payment guidance for researchers and professionals | x | x | x | x | x | x | x | x | x | ||||||||
| Centers for Medicare & Medicaid Services (CMS)—Person and Family Engagement Toolkit (PFE) a guide for measure developers | x | ||||||||||||||||
| National Institute for Health Research (NIHR) INVOLVE—Policy on payment of fees and expenses for members of the public actively involved with INVOLVE | x | x | |||||||||||||||
| Belgian Health Care Knowledge Centre—Position of KCE on patient involvement in health care policy research | x | x | x | x | x | ||||||||||||
| The National Health Council—Principles for compensating patients for patient engagement activities | x | x | |||||||||||||||
| UCL Partners—Recognition payments for patients, carers and public contributors | x | x | x | ||||||||||||||
| SPOR Networks in Chronic Diseases and the PICHI Network—Recommendations on patient engagement and compensation | x | x | x | x | |||||||||||||
| Rising Tide Foundation—Recommendations on patient involvement for funding institutions | x | ||||||||||||||||
| National Institute of Health Research INVOLVE—Reward and recognition for children and young people involved in research—things to consider | x | x | x | x | x | ||||||||||||
| National Institute for Health and Care Research—Reward and recognition for public contributors—a guide to the payment of fees and expenses | x | x | x | x | |||||||||||||
| Sepsis Canada—Sepsis Canada support request form (for members) | x | ||||||||||||||||
| The Change Foundation—Should money come into it? A tool for deciding whether to pay patient‐engagement participants | x | ||||||||||||||||
| US Department of Veteran Affairs—Strengthening Excellence in Research through Veteran Engagement (SERVE) Toolkit 2.0 | x | x | x | x | x | ||||||||||||
| Wisconsin Department of Health Services—Team engagement for quality improvement welcome booklet | x | x | |||||||||||||||
| Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences (NDORMS)—The role of the patient partner | x | ||||||||||||||||
| University of Calgary—Travel and expense reimbursement handbook | x | ||||||||||||||||
| Hamilton—Workbook to guide the development of a patient engagement in research (PEIR) plan | x | x | x | x | x | x | |||||||||||
a
Gift cards offered as a token of appreciation.
b
Gifts or gift cards (for grocery stores, restaurants, retail stores, prepaid visa gift cards etc.) are considered financial compensation when the value is informed by a formal conversion (i.e., 2 h of work at $25/h = $50 gift or gift card value) or patient partners decide that they want to receive payment in the form of gifts or gift cards.
c
Documents that recommend offering financial compensation, but do not recommend a specific method of offering financial compensation.