We present a range of tools and resources that you can use to help plan or guide a partnered research project, evaluate engagement quality, or train/educate yourself and others on how to conduct or otherwise be involved in this sort of research.

Most of the resources listed here (particularly those in the “guides” section) are intended for use by research professionals. However, some of these may still be useful for other members of a research team. We recommend that you take the time to examine these resources and determine for yourself if they might be useful for you, your project, and/or your research team.

These resources are sorted by intended audience. For these purposes:

Research Professionals refers to principal investigators, research assistants, and other individuals for whom research is their primary vocation.
Research Partners refers to non-research professionals who are members of a partnered research team.
Everyone refers to members of both of these groups.

Bear in mind that research professionals may still find significant value in materials designed for research partners and vice versa, and so the utility of any of these resources in a given context should not be discounted based on target audience alone.

These resources are further sorted into four different types (click on them to go to the section):

Rubrics and Assessment Tools are used to assess the quality of engagement in a partnered research project.
Trainings are more structured, often interactive materials that are intended to provide an individual or group with the information and skills needed to engage or promote engagement in the research process in a meaningful way.
Guides are less programmatic and more specific than trainings and provide a more functional level of detail in order to enable an individual or research team to carry out a particular process, task, or set of tasks. Guides tend to be targeted toward research professionals, but they may also be useful for other audiences.
Communication Tools are tools that are specifically designed to help avoid or translate jargon and ensure more meaningful communication within a research team. They are not targeted at any particular group and do not include advantages and disadvantages (see below).

Advantages and Disadvantages are provided in order to help you fine-tune your search for resources. All of the resources listed here have the potential to be useful. However, as with any tool, they all have different ideal uses, and these advantages and disadvantages are here to help you determine at a glance the extent that each tool might meet your needs.

While we use terms like “lived-experience partners” or “people with lived-experience”, externally there are a range of terms used to refer to the same or similar positions. As a result, there may be inconsistencies between resources in this regard. These tools have been developed for use across a variety of different fields and audiences, and differences in word choice are difficult to avoid. However, also bear in mind that the choices that we make around language are important; they can and do represent and perpetuate deep-seated preconceptions about the groups or activities to which they refer.

Rubrics and Assessment Tools

For Researchers

Patient-Centered Outcomes Research Institute: Updated Engagement Plan Template

Type: Rubric/Assessment Tool
Link: https://www.pcori.org/sites/default/files/PCORI-Updated-Engagement-Plan-Template.pdf
Description: This template is specifically designed for PCORI-funded projects to help outline their engagement plans. It walks investigators through all of the components of operationalizing patient engagement for their projects. While intended for PCORI projects specifically, it could still be a useful planning tool in other settings.
Advantages: This could be a helpful planning tool for ensuring that a research team has accounted for all of the core areas of engagement. It is designed for PCORI grantees.
Disadvantages: This template is organization specific and designed for PCORI grantees. Therefore, it may not be applicable in some settings.

Patient and Public Engagement Planning Template (Newfoundland & Labrador Support for People and Patient-Oriented Research and Trials)

Type: Rubric/Assessment tool
Link: https://nlsupport.ca/wp-content/uploads/2022/07/Patient-and-Public-Engagement-Planning-Template.pdf
Description: This template divides the process of planning for patient engagement into different phases, ranging from the “why” of doing partnered work to the details of implementation and evaluation. For each category, the template offers a checklist for each category to help users identify their needs and goals at each phase.
Advantages: This tool offers a means for researchers to critically assess their needs and goals ahead of engagement, which is an important component of successful partnered research.
Disadvantages: This template may not place as much emphasis on early/continuous engagement.

SCPOR Patient-Oriented Research Level of Engagement Tool

Type: Rubric/Assessment tool
Link: https://static1.squarespace.com/static/5c869fd0e666695abe893b3b/t/5d9cbdd75048cd167b- b17c29/1570553304185/Patient-Oriented+Research+Level+of+Engagement+Tool+PORLET+2019+09+30.pdf
Description: The SCPOR Patient-Oriented Research Level of Engagement Tool is a self-assessment tool for scoring five core criteria for Patient Oriented Research (POR) as defined by the Saskatchewan Centre for Patient Oriented Research (SCPOR). This rubric aims to provide an opportunity to reflect on how well POR criteria are being met on a variety of dimensions. This is a useful tool for assessing progress toward meeting those criteria.
Advantages: This tool is fairly quick and easy to use, and is helpful for gauging how well you’re meeting these criteria in particular.
Disadvantages: The instructions for using this tool are somewhat minimalistic and subjective. While useful for evaluating a project itself, this rubric could be less functional as a research tool on its own.

Community Engagement in Research Index (CERI)

Type: Rubric/Assessment tool
Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665736/
Description: The CERI is a 12-item inventory designed to capture the degree of community participation in a project in a multidimensional way. The CERI asks about engagement in specific research activities in order to assess engagement. While this tool is reasonably well validated, additional research may be needed in order to ensure its validity in a broader range of contexts and with a more diverse slate of participants. That said, it is still likely useful in comparable contexts. Scores range from low- to high-engagement.
Advantages: The CERI is relatively short, has good face/content validity, and covers a range of engagement domains.
Disadvantages: More research may be needed to verify the usefulness of this tool across settings.

The Public and Patient Engagement Evaluation Tool (PPEET)

Type: Rubric/Assessment tool
Link: https://ppe.mcmaster.ca/our-products/public-patient-engagement-evaluation-tool
Description: The PPEET consists of three questionnaires:
- Participant Questionnaire: Participant assessment of the engagement initiative
- Project Questionnaire: Review and assess how engagement impacted the project
- Organization Questionnaire: Assess how engagement is being carried out within the larger organization.
- Importantly, the PPEET also has two different sets of these three questionnaires. One is intended for evaluating one-time engagement, and the other is for evaluating ongoing engagement. Its multi-inventory design also allows it to capture the perspectives of patients, managers, and organizational leaders.
Advantages: The PPEET is available in English, French, Dutch, German, and Italian, enabling its use with a broader range of projects. In addition, the multi-pronged set of three questionnaires and the option for measuring either one-time or ongoing engagement make this a more nuanced and flexible tool.
Disadvantages: Researchers have found that the participant component of this tool is more useful for short-term engagement activities, but has less utility for ongoing or longer-term engagement.

Critical Outcomes of Research Engagement (CORE)

Type: Rubric/Assessment tool
Link: https://pubmed.ncbi.nlm.nih.gov/31413988/
Description: The CORE is designed to evaluate the impact that patient engagement has on how research is conducted and its outcomes. The CORE identifies 11 domains as critical to this assessment: Patient-centered; meaningful; team collaboration; understandable; rigorous; adaptable/integrity; legitimate; feasible; ethical and transparent; timely; and sustainable. Each of these domains has one or more assessment questions associated with it. It is important to note here that no reportable measures are identified as part of the CORE, but this framework is still a useful tool for thinking about patient engagement.
Advantages: CORE is one of few evaluation tools that examine the impact that engagement has on research outcomes rather than the quality of engagement itself.
Disadvantages: The CORE identifies no specific outcome measures, limiting its use in research.

Patient Engagement in Research Scale—22 item (PEIRS-22)

Type: Rubric/Assessment tool
Link: https://pubmed.ncbi.nlm.nih.gov/33729634/
Description: The PEIRS-22 is a validated measure of patient engagement in research that was originally developed as a 37-item inventory, and subsequently shortened in order to remove unnecessary items and items that were not well aligned with the constructs in question. The PEIRS-22 demonstrates good internal consistency, as well as structural and construct validity, and its shorter length means that respondent burden is minimized. The PEIRS-22 examines and provides scores for seven domains of engagement, and also produces an overall composite score.
Advantages: The PEIRS-22 is currently one of few well-validated measures for evaluating quality of engagement in a way that can be used in research.
Disadvantages: It is not clear to what extent the modality of administration impacts score outcomes for the PEIRS-22. Simply put, more research is needed in this area. While this should certainly not preclude the use of this tool, as with any other inventory researchers should carefully consider how it is administered.

GRIPP2 Reporting Checklists (Please see the corresponding entry under the Trainings section for additional GRIPP2 resources)

Type: Rubric/Assessment tool
Link: https://www.bmj.com/content/358/bmj.j3453
Description: The Guidance for Reporting Involvement of Patients and Public (GRIPP) checklist was originally developed in order to provide a standard that researchers could use to ensure patient involvement was reported on in a consistent, transparent, and high-quality fashion. The GRIPP2 has subsequently been developed with the intent of developing international consensus on how to best report PPI in research.
Advantages: The GRIPP2 checklist was developed with meaningful input from stakeholders in a wide variety of roles, including partners, researchers, and funders, and as such it reflects a range of important perspectives on the topic. In addition, these perspectives were sourced from an international pool of participants that included individuals from the United States, Australia, and Europe, thus improving the generalizability of the checklist. The GRIPP2 can be used proactively or retrospectively for planning or evaluation, respectively.
Disadvantages: The research on how the GRIPP2 can be used across different study designs is still somewhat limited. In addition, while the GRIPP2 is quite functional, it is not highly prescriptive. While this is not a weakness per se, it may limit usability for individuals without more extensive research experience that would allow them to contextualize the tool.

For Everyone

The Family Engagement in Systems Assessment Toolkit (FESAT)

Type: Rubric/Assessment tool
Link: https://familyvoices.org/familyengagementtoolkit/
Description: The FESAT was developed by Family Voices based on an environmental scan and a series of key informant interviews that were conducted with the intent of identifying ways in which family partners can be supported in achieving meaningful engagement in health care systems research. Through analysis of these materials and interviews, researchers were able to identify four theoretical key domains for promoting and ensuring engagement that is both meaningful and sustainable: Representation, transparency, impact, and commitment. For each domain, specific criteria were proposed to help organizations meet this end. Based on these domains, Family Voices developed the FESAT with the goal of offering organizations conducting partnered work with a tool that they can use to assess how they are doing within each category.
Advantages: The FESAT is a reasonable length and should be accessible to most users. It can also be used before, during, and after a project in order to help determine what should be done, how it is being done, and how it could be improved in the future.
Disadvantages: It does not appear that the FESAT has been validated. While useful, it may be more applicable for evaluating engagement rather than as a research tool.

The National Health Council Rubric to Capture the Patient Voice: A Guide to Incorporating the Patient Voice into the Health Ecosystem

Type: Rubric/Assessment tool
Link: https://nationalhealthcouncil.org/additional-resources/patient-engagement-rubric/
Description: While nominally designed for partners, this resource is also useful for researchers who intend to include patient partners in their research. It is intended for use in evaluating the quality and attributes of patient-centered research, as well as for providing guidance on meaningful engagement in research. This resource provides detailed rubrics on a range of relevant engagement domains, including patient partnership, transparency, meaningful outcomes, and timeliness. It also includes a glossary of relevant research terms, personal vignettes, and detailed backgrounds on each domain.
Advantages: The domain-based structure of this rubric allows a high level of focus and detail. In addition, the rubric itself provides a great deal of useful background information.
Disadvantages: This rubric is fairly long and very text heavy. It is not intended for use on its own and is not “scorable” in a quantifiable way.

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Trainings

For Researchers

Developing our international PPI evidence base through high-quality reporting: The evolution and use of GRIPP2

(Please see GRIPP2 Reporting Checklists under Rubrics and Assessment Tools for additional resources on the GRIPP2 checklist itself)

Type: Training
Link: https://training.cochrane.org/resource/developing-our-international-PPI-evidence-base-GRIPP2
Description: This training offers an overview of the GRIPP2 reporting checklist, how it was developed, and how it has evolved to its current state. GRIPP2 stands for Guidance for Reporting Involvement of Patients and the Public, and rep- resents the second iteration of a set of reporting guidelines for patient and public engagement in research. The GRIPP and subsequently the GRIPP2 were developed by the EQUATOR network in order to offer a comprehensive, meaningful system that researchers could use to ensure high-quality, transparent, and consistent reporting of this type of engagement. For more information on the GRIPP2, please see the entry in Rubrics and Assessment Tools, above.
Advantages: This is a good tool for providing additional context for the GRIPP2 that may be useful for individuals intending to use it without the benefit of more extensive experience in this area.
Disadvantages: This resource does not teach how to use the checklist and therefore is likely not particularly useful without additional information about that tool itself. Use in conjunction with GRIPP2 resource in “Rubrics and Assessment Tools”, above.

For Lived-Experience Partners

FYREworks

Type: Training
Link: https://www.fyreworkstraining.com/
Description: FYREworks was developed by the Patient-Centered Outcomes Research Center (PCORI) in conjunction with a group of youth, parents, researchers, and educators, with the goal of creating a more broadly accessible training to prepare youth, caregivers, and researchers to meaningfully participate in partnered research. FYREworks provides a good, comprehensive introduction to partnered research that is accessible to youth and adults alike. This training consists of a set of three online training units. Each unit is self-directed and consists of two to four modules.
Advantages: FYREworks offers a fun format that is easy to use. While completion requires a two- to three-hour time commitment, the program can be broken up over time as needed, allowing users a degree of flexibility. FYREworks is free and self-paced. It is also accessible for younger team members and so may be particularly useful when working with youth partners. Upon completion, users receive a certificate indicating that they have finished, which may be useful for larger organizations or projects in which training verification is required.
Disadvantages: This training is self-administered and offers no opportunity to interact with others. In addition, some of the medical content used may be discomfiting for some users. Finally, FYREworks also appears to have little available customer support, and it is only available in English.

PCORI Research Fundamentals

Type: Training
Link: https://www.pcori.org/engagement/research-fundamentals
Description: PCORI Research Fundamentals is a free training package designed for research partners who are new to partnered research. This program uses plain language and is divided into five modules, each based on a different phase of the research process.
Advantages: A module-based system makes it easy to break up the training into manageable chunks. Content is fairly comprehensive, and the availability of transcripts can make completion faster and improves accessibility (which is already bolstered by the program’s compatibility with screen readers). The self-guided structure means that trainees can “choose their own adventure” or focus on an area of particular need.
Disadvantages: This training is fairly long, somewhat visually repetitive, and may be redundant for partners w/research experience.

For Everyone

Patient-Oriented Research Curriculum in Child Health (PORCCH)

Type: Training
Link: https://porcch.ca/
Description: PORCCH is a module-based program providing basic information for research partners on health research and research methodology, including foundational and practical info on successful engagement. An additional research ethics module is currently in production, and there are tentative plans for a Spanish-language version, although this is not confirmed. PORCCH is specifically focused on child health research. This training may also be useful for researchers who are new to partnered work.
Advantages: PORCCH uses clear terminology and good visual aids. The module-based structure allows focusing on particular areas if desired, and the program will soon include an ethics module and may eventually be available in Spanish.
Disadvantages: This training could stand to be a little more engaging, as some users may find it boring or text heavy. As described above, it may also be useful for researchers who are new to partnered work, but is more focused on research partners.

Learning Together Simulations (Holland Bloorview)

Type: Training
Links: Manual: https://hollandbloorview.ca/sites/default/files/2022-02/ChildBright-SimulationManual.pdf Access request: https://hollandbloorview.ca/access-simulations
Description: This training involves a series of four short video simulations intended to be used with a facilitator guide to promote discussion and learning. This program intends to allow multidisciplinary teams to reflect on perspectives and approach to patient engagement in specific scenarios. Topic areas include: Finding a family partner; Partnering to set research objectives; Reviewing results; and Dissemination.
Advantages: This is a free, scalable, relatively short activity that promotes discussion and can involve all team members. In addition, the simulation format allows participants to learn content and address their questions in a more nuanced fashion. Finally, the four topic areas cover the major phases of a partnered research project.
Disadvantages: Successfully running these simulations requires a well-trained facilitator in order to be effective and is potentially time-intensive.

Family Engagement in Research Course (CanChild, McMaster University)

Type: Training
Link: https://www.canchild.ca/en/research-in-practice/family-engagement-in-research-course
Description: This 10-week (30-hour) online course is designed for both researchers and lived-experience partners who are interested in conducting research on child health. The course focuses on the importance of partnered research, how to conduct successful partnerships, and common barriers, as well as ethical issues present in this sort of work. The course also offers a range of useful tools and resources for evaluating and supporting partnered work.
Advantages: This training appears more intensive than the other resources on this list. It also intends to integrate researchers and partners within the digital classroom, which may help to provide a more holistic perspective. Although the course costs money, scholarships are available for eligible applicants, and family partners are prioritized for this funding. Also, course completion comes with a certificate.
Disadvantages: The 10-week time commitment may prove unrealistic for busy researchers and parents. In addition, the $500 cost could be prohibitive for individuals who cannot get a scholarship. Finally, the course is taught twice annually, and some interested parties may not be able to make this timing work with their schedules.

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Guides

For Researchers

Strategy for Patient-Oriented Research (SPOR): Patient Engagement Framework

Type: Guide
Link: https://cihr-irsc.gc.ca/e/documents/spor_framework-en.pdf
Description: Describes the need for and benefits of patient-engaged research, along with outlining guiding principles and describing core areas of engagement. Includes a section on evaluation.
Advantages: Relatively short. Includes an evaluation section, which is an important component of this work.
Disadvantages: This document is from 2014 and may not be up to date with all recent research and standards. Cross-reference with more recent materials before use.

Methods of Patient & Public Engagement: A Guide

Type: Guide
Link: https://static1.squarespace.com/static/5e57d5337fe0d104c77cca10/t/5ed808e613338b69dcb8f6df/1591216360358/ 20.05.20+PE+methods+of+Engagement+web.pdf
Description: A guide for exploring options for participatory approaches and engagement methods at different stages of re- search/levels of engagement. The goal of this guide is to help research teams to explore different approaches/activities for engagement at different research stages. It is useful for looking at and deciding between different options for approaching meaningful engagement.
Advantages: This guide does a good job of providing a range of options for engagement at different stages of the research process. It is very visually clear, with both color coding and numbering systems for organization.
Disadvantages: The long, text-heavy format may be less suitable for some users or situations.

Recommendations on Patient Engagement Compensation

Type: Guide
Link: http://cpn-rdc.ca/docs/default-source/default-document-library/pe-compensation-report_final.pdf?sfvrsn=b844aca9_2
Description: A guide that outlines recommendations and policies for compensating partners. Its goal is to teach researchers best practice for how to properly compensate partners and plan budgets appropriately from the get-go. Serves as a useful road map for reducing financial barriers to participation and adequately recognizing contributions.
Advantages: This guide covers a broad range of possible expenses and recommends specific compensation levels based on either unit of time or level of engagement. This resource also provides specific recommendations for working with indigenous elders.
Disadvantages: Long and text heavy.

A Resource Toolkit for Engaging Patient and Families at the Planning Table

Type: Guide
Link: https://www.albertahealthservices.ca/assets/info/pf/pe/if-pf-pe-engage-toolkit.pdf
Description: This guide provides an overview of the components and types of successful family engagement, its value, levels of involvement, and evaluation, and also provides practical guidance in these areas.
Advantages: Provides a generally detailed overview of all the components of successful engagement, from planning to recruitment, as well as reviewing common pitfalls and the means to avoid them.
Disadvantages: Text heavy, long, and somewhat challenging to navigate. Provides a good overview but may lack detail in certain areas.

Information for Researchers

Type: Guide
Link: https://www.phc.ox.ac.uk/ppi/information-for-researchers
Description: This provides an overarching overview of PPI: What it is, why it’s important, and how to do it. It is intended as a reference document to guide researchers and should not be viewed as fully comprehensive. This guide covers topics from how to define research topics using public engagement, structuring the integration of PPI, recruiting partners, compensation, orientation/training of both staff and partners, a range of best practices, and working with “seldom-heard” groups. It also discusses some approaches to evaluation.
Advantages: Covers a very wide range of topics and offers links to other resources for more information. It is also fairly well organized and easy to navigate.
Disadvantages: Some organization-specific suggestions around compensation may not be applicable in other contexts. Very long and text heavy.

A Researcher’s Guide to Patient and Public Involvement: A guide based on the experiences of health and medical researchers, patients, and members of the public

Type: Guide
Link: https://oxfordbrc.nihr.ac.uk/wp-content/uploads/2017/03/A-Researchers-Guide-to-PPI.pdf
Background Research:
- Locock L, Boylan AM, Snow R & Staniszewska S. (2016). “The power of symbolic capital in patient and public involvement in health research.” Health Expectations. DOI: 10.1111/hex.12519.25
- Crocker JC, Boylan AM, Bostock J & Locock L. (2016). “Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study.” Health Expectations. DOI: 10.1111/hex.12479.26
Description: A guide for researchers who are interested in PPI or have begun the process of conducting PPI research. Its intent is to provide the reader with an overview of PPI research, drawing upon two research projects on the experiences of patient/public partners and researchers. The guide provides information on the value of PPI, how it plays into different stages of research, reasons for involvement, and best practice in recruitment/training/compensation, as well as practical advice to help guide researchers. In addition, it addresses evaluation of PPI as well as common pitfalls.
Advantages: Covers a large number of topic areas; includes sections specifically on DEI.
Disadvantages: Text heavy and pretty long. Research based, but only from two studies, so generalizability/transferability may be somewhat limited.

Patient and Public Engagement in Health and Social Care Research

Type: Guide
Link: https://www.rds-yh.nihr.ac.uk/wp-content/uploads/2015/01/RDS_PPI-Handbook_2014-v8-FINAL-11.pdf
Description: Overview of a range of topics in partnered research. Topics include the value of partnered research, developing partnerships, planning effective partnerships, and how to involve partners in different phases of research. Also provides templates for a variety of these activities, including recruitment and role description. In addition, includes a glossary of common research jargon, as well as guidance on compensation and evaluation.
Advantages: Provides useful templates, covers a wide range of topics, and is easy to navigate.
Disadvantages: Long, text heavy. Templates may be limiting if not considered and adapted situationally. The broad scope of focus means that, although it covers a lot of ground, detail may be lacking in some areas.

Every Child Thrives: Doing Evaluation in Service of Racial Equity

Type: Guide
Link: https://everychildthrives.com/doing-evaluation-in-service-of-racial-equity/
Description: This series of three guides aims to provide detailed instruction on how to properly evaluate the impact of a program or change on the lives of children as well as their families in a manner that fully accounts for the priority of racial equity in this process. The three guides cover the following subject matter:
- Guide 1: Debunking myths
- Guide 2: Diagnosing biases and systems
- Guide 3: Deepening community engagement
Across these three subject areas, Every Child Thrives aims to show how researchers and partners can incorporate the core values of self-reflection, learning, and racial equity into their work.
Advantages
- The primary focus on racial equity is fairly unique among the resources listed here, and provides an incredibly important set of goals and values that should be integrated into all research. By helping research team members learn to take a critical lens to preconceived notions around race and racial equity, critically examine individual and systemic biases, and cultivate meaningful engagement with communities in the service of promoting equity, these guides could be an important reference tool for any evaluator.
- Wordy, but well organized and reasonably accessible.
- The iterative nature of the three guides means that they build upon each other to paint a cohesive picture of what they are aiming to achieve.
Disadvantages
- While these resources are absolutely useful in a research context, they are focused on program evaluation rather than clinical research. As such, they may require some re-contextualization depending on the situation in which they are applied.
- As mentioned, these guides are quite long and may be less useful as a quick reference.

Resource Guide: Patient and Community Engagement in the Design and Implementation of Research Studies

Type: Guide
Link: http://stmichaelshospitalresearch.ca/patient-and-community-engagement/resource-guide/
Description: This resource also contains three guides, each targeting researchers who have varying levels of experience with patient and community engagement in research (PCE). Each guide contains a range of useful additional resources.
- Level 1: Learn- This guide is targeted at scientists, trainees, and research staff who have little to no exposure to patient/community engagement in research. The guide introduces PCE and discusses:
  - The benefits of engagement
  - Frameworks for engagement
  - Historical context
  - The value of lived experience
  - Best practices
  - Capacity building
  - Power dynamics
  - Developing trust
- Level 2: Apply- This guide is intended for scientists, trainees, and research staff who have some knowledge and experience with PCE and want to learn more about implementing best practice in this area. Topic areas cover:
  - Providing meaningful partner support
  - Best practices for including people with lived experience
  - Understanding power sharing
  - Sharing budgeting/resources
  - Co-learning
  - Best practices in developing equitable teams
  - Anti-racist, equitable, socially accountable approaches to recruitment
- Level 3: Transform- This guide is for scientists, trainees, and research staff with significant experience with PCE and seek to develop a deeper understanding of advancing these efforts, specifically through a diversity, equity, and inclusion (DEI) lens . Topic areas cover:
  - Increasing the number of people with lived experience in leadership positions
  - Minimizing harm to communities
  - Gaining practical experience
Advantages: These guides were developed with the direct involvement of patient and community partners. In addition, the multi-level approach allows for a broader range of consumers, as well as entry points for individuals or organizations with varying levels of experience doing partnered work.
Disadvantages: This resource is not intended for non-research professionals. While it offers a comprehensive way for researchers to learn more about PPI that may also be useful for lived-experience partners, it is not directed at this audience.

For Lived-Experience Partners

Partnering with Youth, Families & Patients in Research: A Standard of Compensation for Youth, Family, and Patient Partners

Type: Guide
Link: https://livedhealthexperience.org/wp-content/uploads/2023/12/standard-of-compensation-2023-partners.pdf
Description: This is essentially similar content to the investigator version described above, with focus on the partner perspective. This guide intends to inform partners on what they should expect in terms of compensation and orientation, and also includes a glossary of commonly used research jargon. A Spanish language version is available for download via the link above.
Advantages: This guide is fairly comprehensive, easy to read, and up to date. It provides information with the partner perspective in mind.
Disadvantages: The formatting of this document may make it less useful as a quick reference guide.

For Everyone

UK Standards for Public Involvement: Better public involvement for better health and social care research

Type: Guide
Link: https://sites.google.com/nihr.ac.uk/pi-standards/standards?pli=1
Description: This guide outlines the United Kingdom’s standards for public involvement in research. The document offers descriptions of six different standards: communications; governance; impact; working together; inclusive opportunities; and support and learning. For each standard, the guide offers reflection questions to help the reader determine if they are meeting the standard in question.
Advantages: Accessible language, not text heavy, reasonable length.
Disadvantages: This guide, while informative, does not offer much information on what to do if the reader finds themselves to not be up to standard. In addition, the guide is fairly broad. However, this may also be an advantage because it makes it more broadly applicable.

Evidence-Informed Practices and Strategies for Patient-Oriented Research (POR): A ‘Menu’ for Research Teams

Type: Guide
Link: https://www.bcahsn.ca/sites/default/files/2021-06/POR%20Menu_20191004.pdf
Description: This resource is designed for use by research teams who are in the process of moving toward POR. As its title suggests, it intends to offer a “menu” of evidence-based management strategies for doing this sort of partnered work. Ideally, it would be used by researchers in conjunction with incoming lived-experience partners to get conversations started about how to conduct patient-engaged work in productive, meaningful ways.
Advantages: This guide is accessible to a range of experience levels, provides multiple management approaches/options, and is intended for collaborative use with the whole team.
Disadvantages: While nominally intended for use by all team members, this tool is very much from the perspective of the professional researcher. While it may be accessible to lived-experience partners without research experience, it could feel exclusive based on that perspective.

Partnering with Youth, Families & Patients in Research: A Standard of Compensation for Investigators

Type: Guide
Link: https://livedhealthexperience.org/wp-content/uploads/2023/12/standard-of-compensation-pis.pdf
Description: This guide is designed as a practical tool for professional investigators to develop realistic and equitable bud- gets for patient-engaged research based on best practices in compensating lived-experience partners. The guide discusses different levels and types of engagement and how they should be compensated, as well as how to budget for research more generally with the needs of lived-experience partners in mind. Also provides example templates for planning engagement, and accounts for a wide range of potential expenses.
Advantages: Well organized, detailed, easy to read, and up to date. There is a partner-specific version available as well (see above).
Disadvantages: Formatting makes it less useful as a quick reference guide.

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Communication Tools

Everyday Words for Public Health Communication

Type: Communication Tool
Link: https://tools.cdc.gov/ewapi/termsearch.html?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fhealthcommuni- cation%2Feverydaywords%2Findex.html
Description: Avoiding unnecessary jargon is key to ensuring that the non-research professionals on a research team are able to participate and contribute in a meaningful way. This handy website from the CDC allows users to search terms commonly used in public health and offers plain-language descriptions and alternatives. It also can work inversely, offering jargony versions of accessible language.

Plainlanguage.gov Checklist for Plain Language

Type: Communication Tool
Link: https://www.plainlanguage.gov/resources/checklists/checklist/
Description: Plainlanguage.gov offers a useful checklist for ensuring that your content is accessible to your intended audience. This tool provides a list of suggestions for ensuring writing is in plain language, along with links to additional information on each item.

Other Resources

Project Management Body of Knowledge (PMBOK)

Link: https://www.pmi.org/pmbok-guide-standards/foundational/pmbok/about
Description: PMBOK is an invaluable tool for anyone managing a project. The information contained therein represents “good practice for most projects most of the time.” This guide is designed with flexibility in mind, and its goal is to allow a project manager to select and tailor the best approach to their unique needs. The 7th edition of PMBOK was recently released, and so even researchers familiar with this guide may benefit from revisiting it. There is a cost for purchasing PMBOK.

PCORI Engagement Tool and Resource Repository

Link: https://www.pcori.org/engagement/engagement-resources/Engagement-Tool-Resource-Repository
Description: Along with its module-based “Research Fundamentals” training described earlier in this chapter, the Patient-Centered Outcomes Research Institute (PCORI) also maintains a database of engagement resources that may be of interest to researchers or partners with lived experience. While some of these resources are included in this chapter, others are not, and so we recommend exploring this database if you are not able to find what you are looking for here.

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