Engagement Resources (General Guidelines & Recommendations)

#HowToDoPtEngagement / #HowNotToDoPtEngagement (2018)

[@CourageSings and Bryn Robinson]

A workbook that collects feedback from several Twitter threads started by @CourageSings in February of 2018, this document represents insights from 74 unique patient partners and advocacy organizations. Inspired by a blog post written by Isabel Jordan, the #HowNotToDoPtEngagement and #HowToDoPtEngagement hashtags created a wealth of information that was generously compiled and made publicly available by Bryn Robinson, Clinical Research Manager at the Maritime SPOR Support Unit. 

 

Peer Engagement Principles and Best Practices (2017)

[B.C. Centre for Disease Control - BCCDC]

Produced on behalf of the British Columbia CDC by the Peer Engagement and Evaluation Project Team, this document is the result of an extensive consultation process that included 120 people with lived experience and 99 healthcare providers. Though this guide was developed as part of British Columbia's harm reduction efforts (peers are here defined as people who have past or present lived experience of drug use who use that experience to inform their professional work), the recommendations are appropriate for any research pursued in partnership with health service users.  

 

Engaging Patients in Patient Safety: A Canadian Guide | Chapter 1 - Engaging Patients as Partners (2017)

Engaging Patients in Patient Safety: A Canadian Guide | Chapter 2 - Partners at the Point of Care (2017)

Engaging Patients in Patient Safety: A Canadian Guide | Chapter 3 - Partners at Organizational and System Levels (2017)

Engaging Patients in Patient Safety: A Canadian Guide | Chapter 4 - Evaluating Patient Engagement (2017)

[Canadian Patient Safety Institute - CPSI]

A high-quality, comprehensive introduction to patient engagement in Canada, with an emphasis on patient safety. Nevertheless, this document provides guidance that is applicable to patient engagement in any healthcare sector. Includes a wide array of useful web-links, as well as a description of the current state of patient engagement in Canada.

 

Partnering with Citizens in Research (2016)

[Patients Canada]

Developed by Patients Canada, this PowerPoint presentation describes the basics of partnering with service-users and caregivers from the patient's perspective. Includes a section on "Guiding Principles for Partnerships" that describes the practices that patients have found effective when recruited as partners on research teams. 

 

Rules for Engagement: Lessons From the PANORAMA Project (2016)

[The CHANGE Foundation]

A "lessons learned" document prepared by the Ontario CHANGE Foundation, this 2016 publication contains a wide range of practical suggestions for research teams when starting or carrying out a patient engagement strategy.

 

Patient Engagement and Canada's SPOR Initiative: A Resource Guide for Research Teams and Networks (2015)

[Ontario SPOR Support Unit - OSSU]

A resource guide prepared on behalf of the Ontario SPOR Support Unit by Julia Abelson at McMaster University. As stated in the introduction, "this document seeks to clarify key concepts and terms relevant to involving patients in health research...describe, at a very high level, the current state of evidence about patient engagement...[and] assemble in one place a selection of resource documents collected from leading patient engagement organizations around the world...". Contains a wide array of useful web-links.

 

Planning for Consumer and Community Participation in Health and Medical Research (2014)

[Consumer and Community Health Research Network]

Written by Anne McKenzie and Bec Hanley, this 80 page document provides step-by-step guidance on how to actively involve health service users and community participants in research.

 

Strategy for Patient Oriented Research - Patient Engagement Framework (2014)

[Canadian Institutes of Health Research - CIHR]

A brief introduction to the Canadian Strategy for Patient Oriented Research (SPOR) initiative, providing information on provincial SPOR support units, SPOR networks, and some useful resources for Canadian research teams looking to include service-user and caregivers as partners in research. As a major funder of patient-engaged research projects, SPOR leads Canadian efforts to include patient partners in health research and ensure that the patient voice in represented in the design of the Canadian healthcare system.

 

Briefing Notes for Researchers: Public Involvement in NHS, Public Health and Social Care Research (2014)

[INVOLVE]

An introduction to public involvement in research put together by the U.K.'s National Health Service (NHS) INVOLVE organisation. This document is intended as a primer for researchers new to the field, and includes a wide array of links to on-line resources. Though the latest version of this document was released in 2012, the internal web-links were updated in 2014.  

 

Consumer and Community Participation in Health and Medical Research (2007)

[Consumer and Community Health Research Network]

Written by Anne McKenzie and Bec Hanley, this 102 page document anticipates the 2014 publication by the same authors. Written in plain English, this guide was based off interviews held with people who had experience of engaging health service-users (consumers), including community members, researchers and research managers. Contains a wide array of quotes taken from participant interviews. 

 

Choosing Methods for Patient and Caregiver Engagement: A Guide for Healthcare Organizations

[Health Quality Ontario]

An short document containing a wide array of web-links that offers suggestions for healthcare organizations seeking to select appropriate methods for patient engagement. Five pages in length.


Engagement Resources (Blog Posts and Commentaries)

Patient Engagement: You're Doing it Wrong (2018)

[Isabel Jordan]

The blog post that launched the influential #HowNotToDoPtEngagement hashtag on Twitter,  this piece describes an especially negative experience that one patient advocate had when collaborating with a health research team. A useful article for teams that want to avoid some of the more common mistakes made by researchers when attempting to include service-users in their studies.

 

Please Don't Shame or Guilt Patients - Some Do's and Don'ts for Working with Patients (2018)

[Dana Lewis]

A blog post released in February of 2018, patient advocate Dana Lewis describes some of the best practices and common mistakes made by research teams, with a special focus on issues of payment, remuneration, and  the social nuances of having to "ask for money." An important resource for teams that are considering whether or not to provide compensation to their partnered researchers.

 

The Cost of Patient Engagement (2017)

[Dana Lewis]

A July 2017 blog post by Dana Lewis, this article describes the cost of patient engagement from the perspective of the service-user. Focused on the frequently ignored or unconsidered costs borne by patient partners, this post provides researchers with an excellent primer on how to provide compensation in an accurate and considerate manner.    

 

Patient Engagement in Guidelines: Reality or Myth? (2017)

[Melissa Armstrong]

A blog post by Neurologist Melissa Armstrong describing the substantial gap between theory and practice in the development of guidelines co-authored by patients and researchers. This review of a British Medical Council article includes numerous links to websites describing international standards on the development of clinical practice guidelines.

 

Exploring the Purpose and Meaning of Patient Engagement in Pediatric Neurodiversity Research (2017)

[Jennifer Johannsen]

Despite its rather technical title, this article contains a wealth of practical information for anyone wanting to become involved in a partnered research study. In addition to the standard details one finds in these write-ups, it discusses parts of the service-user/researcher relationship that aren't usually mentioned in the more "official" guides. In particular, the author talks about the way that patient engagement is frequently symbolic in practice, without much sincere intention that the collaboration actually impacts or effects the study.

 

10 Ways Patient Engagement in Canada Smacks of Tokenism (2014)

[Sue Robins]

A short blog post by Sue Robins listing the ten most common mistakes health research teams make in engaging patients. A very worthwhile read for researchers who would like to avoid tokenism in their engagement efforts.  

 

Ramblings Continued + Tips for Researchers Tempted to Use PPI (2013)

[David Britt]

A short blog post by partnered service-user David Britt, this article contains his "5 Top Tips on Patient and Public Involvement for Researchers." Some practical advice for research teams, this quick read contains useful information on how to respectfully develop a meaningful relationship with partnered researchers. 


Engagement Resources (Policy Documents & Position Statements)

Patients Included (2018)

[REshape Center]

Patients Included, founded by Lucien Engelen of the REshape Center, is a grass-roots, international effort to ensure that medical conferences and other health research events include patients as invited, properly-funded participants and co-designers. Patients Included encourages event-organizers to self-certify their conferences by signing the group's charter, including a commitment to include patients and caregivers with experience relevant to the conference's central theme in the design and planning of the event.

 

National Standards for Public Involvement (2018)

[National Health Service - NHS]

Released by the U.K.'s NHS in collaboration with a wide range of organizations and agencies, this document acts as the main policy guide for organizations seeking to involve the public in research within the United Kingdom.

 

Guidance on Co-Producing a Research Project (2018)

[INVOLVE]

Put out by the U.K.'s INVOLVE group, this guide document outlines some of the major principles that should be taken into account when co-producing a research study with service-users, patients or caregivers. 

 

Person and Family Engagement Strategy (2016)

[Centers for Medicare and Medicaid Services - CMS]

A description of the CMS strategy for engaging families and individuals in the healthcare system. Though this document mostly focuses on the incorporation of patient feedback in improving healthcare, there is significant overlap with the principles of patient-centered research. 

 

Statement of Consumer and Community Involvement in Health and Medical Research (2016)

[National Health and Medical Research Council - NHMRC]

A bulletin-style introduction to public involvement in research, put together by the Australian Government's National Health and Medical Research Council (NHMRC). Though much of this guide contains information on public involvement in health research that is more relevant from a policy-level perspective, there is a great deal here that can be applied at a more practical level. In particular, the appendices included here contain information about different models of service-user engagement, and a list of useful resources that are worth exploring.  

 

What We Mean by Engagement (2015)

[Patient-Centered Outcomes Research Institute -PCORI]

A position statement developed by the U.S. based PCORI, this web-page includes a good collection of links and information on the principles of patient-partnered research.


Engagement Resources (Funding & Compensation)

A Guide for Paying Peer Research Assistants (2017)

[B.C. Centre for Disease Control - BCCDC]

A guide prepared by AM Greer and JA Buxton in association with the Paying Peers Working Group. An especially comprehensive approach to compensation, this document contains principles, considerations and recommendations not often included in similar guidelines. Though this guide was developed as part of British Columbia's harm reduction efforts (peers are here defined as people who have past or present lived experience of drug use who use that experience to inform their professional work), the recommendations are appropriate to any research pursued in partnership with health service users.

 

Compensation Guidelines for Engaging Patients as Partners in Research (2017)

[Strategy for Patient Oriented Research - SPOR]

A draft version of the compensation guidelines recommended by Canada's SPOR group, released in 2017. Focuses specifically on compensation (i.e. paying patient partners for their time) as opposed to remuneration. Useful for both service-users and researchers. Eight pages in length.

 

Should Money Come Into It? A Tool for Deciding Whether to Pay Patient-Engagement Participants (2017)

[The CHANGE Foundation]

Developed in conjunction with 31 Ontario residents, this is an updated version of the CHANGE foundation's original 2015 guide, and includes a linked decision tool designed to assist health research teams make choices around compensation. 

 

Budgeting for Engagement Activities (2016)

[Patient-Centered Outcomes Research Institute -PCORI]

A brief guide to compensation and budgeting for patient-engagement research, released in 2016 by the U.S. based PCORI. Contains some limited information on patient and caregiver partner expenses, engagement event costs, and incorporating partner feedback. Four pages in length.

 

Budgeting for Involvement: Practical advice on budgeting for actively involving the public in research studies (2013)

[INVOLVE]

Advice on remunerating and compensating lived experience representatives when recruited as partners on a research study. This 32 page document provides advice on what expenses to anticipate when preparing a budget that provides for patient partners, and includes practical examples of projects that have successfully budgeted for the involvement of service-users and caregivers in research. Useful in almost any national context, the guide also provides extensive links to on-line resources, and a detailed discussion of incidental costs that are frequently not considered when planning for patient involvement (e.g. childcare, personal assistants, training, and access to research facilities).


Engagement Resources (Writing)

Automatic Readability Checker

[Readability Formulas]

An online tool that uses seven popular readability formulas to characterize the reading and grade level of a piece of writing. Thanks to Alies Maybee from the Patients Advisory Network for providing this resource.

 

Writing About Biomedical and Health Research in Plain English: A guide for authors

[Access to Understanding]

A guide prepared by the British Library on behalf of the Access to Understanding group, this 12-page document provides general advice for researchers looking to write about biomedical topics using plain English. Though much of advice here is fairly generic, the "Learn More" section includes a good collection of links with detailed information on writing about statistics and scientific topics, and how to avoid jargon.


Engagement in Health Research Literature Explorer (2018)

[Patient-Centered Outcomes Research Institute - PCORI]

Containing 1103 searchable articles on patient engagement in health research, this is the most comprehensive database of peer-reviewed research articles available on the web.

 

Patient Engagement: Tools and Resources (2018)

[St. Michael's Hospital]

A carefully selected list of patient engagement web-links, this collection includes some excellent Quality Improvement (QI) resources that can be easily adapted to patient-partnership initiatives.

 

Patient Engagement Resource Hub (2017)

[Canadian Foundation for Healthcare Improvement - CFHI]

A massive collection of links on patient and family engagement, the CFHI patient engagement resource hub contains over 300 resources from a wide array of sources. 

 

Selected Resources to Support Patient Engagement in Patient Safety (2016)

[Canadian Patient Safety Institute - CPSI]

A high-quality selection of patient engagement web-links, the CPSI page is well-organized and comprehensive. Separated into eight sub-sections, this collection includes resources dedicated to both patient and academic research partners, resources focused on evaluation and diversity, and resources developed in partnership with health service-users.   

 

Primary Health Care - Patient Engagement Resource Centre (2016)

[Primary Health Care - PHC]

Funded by the Ontario SPOR Support Unit (OSSU) INSPIRE Primary Health Care Research Network, this website contains a good selection of links focused on patient engagement.

 

Resources for Health Care Providers (2016)

[Health Quality Ontario]

A searchable index of articles and grey literature on patient engagement from the perspective of health care organizations, the Health Quality Ontario page contains documents describing how to get started working with patient advisors, communicating in plain language, and building equity and diversity into your engagement activities.

 

Resources - Patient Voices Network

[BC Patient Safety and Quality Council]

A searchable index of 52 articles and documents on patient engagement. organized for both patient partners and healthcare partners. The "Patient Engagement: Tips for Facilitation" and "Patient Partner Preparation" broadsheets both contain some very useful information.

Engagement Resources (Databases of Web-Links)


Liabo K, Boddy K, Cockcroft E, Britten N. Clarifying the Roles of Patients in Research. BMJ. (2018) 

 

Black A, Strain K, Wallsworth C, Charlton S-G, Change W, McNamee K, et al. What Constitutes Meaningful Engagement for Patients and Families as Partners on Research Teams? Journal of Health Services Research and Policy. (2018)

 

Prior SJ, Campbell S. Patient and Family Involvement: A discussion of co-led redesign of healthcare services. Journal of Participatory Medicine. (2018)

 

Kirwan JR, Maarten de Wit M, Frank L, Haywood KL, Brace-McDonnell S, Lyddiatt A, et al. Emerging Guidelines for Patient Engagement in Research. Value in Health. (2017)

 

Shen S, Doyle-Thomas KAR, Beesley L, Karmali A, Williams L, Tanel N, et al. How and Why Should We Engage Parents as Co-Researchers in Health Research? A Scoping Review of Current Practices. Health Expectations. (2016)

 

Bagley HJ, Short H, Harman NL, Hickey HR, Gamble CL, Woolfall K, et al. A Patient and Public Involvement (PPI) Toolkit for Meaningful and Flexible Involvement in Clinical Trials - A Work in Progress. Research Involvement and Engagement. (2016)

 

Esmail L, Moore E, Rein A. Evaluating Patient and Stakeholder Engagement in Research: Moving from theory to practice. Journal of Comparative Effectiveness Research. (2015)

 

Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. Patient Engagement in Research: A systematic review. BMC Health Services Research. (2014)

 

Carman KL, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C, et al. Patient and Family Engagement: A Framework for Understanding the Elements and Developing Interventions and Policies. Health Affairs. (2013)

 

Crawford MJ, Rutter D, Manley C, Weaver T, Bhui K, Fulop N, et al. Systematic Review of Involving Patients in the Planning and Development of Healthcare. BMJ. (2002)

Engagement Resources (Open-Access Articles)