Intended Audience: The Learn level is appropriate for scientists, trainees and research staff who have not heard of, or have very little exposure to patient and community engagement in the design and implementation of research studies.
Many scientists, trainees and research staff have limited experience in designing (and implementing) research studies in partnership with patients and community partners, and patient and community partners may need additional assistance to fully grasp the details of the scientific methodology. However, patient and community members can contribute immensely. They can provide a wealth of information regarding lived experience, which can help in the process of designing and implementing a research study. In turn, researchers learn about the benefits, challenges, resources and other requirements to ensure an equitable, engaging and respectful dialogue.
Patient and clinical engagement is viewed as an important component of the research process. However, too often in preclinical research, it is not considered until after experimental progress has been made and conclusions are drawn. There is an evolving body of knowledge to identify that without such engagement, relevant questions and research opportunities may be missed.
As an example, women remain vastly underrepresented in many areas of research, and respond differently to various therapies, as a priori, the fundamental research questions did not consider sex, gender and other important variables. This has two important consequences: firstly, it discriminates against members of society, and secondly, it may lead to missed opportunities to better understand biological differences.
The consequences of which can be significant, and may include failure to identify important therapeutic opportunities or more concerning, failure to identify potential adverse effects where therapeutics are considered. By including Patient and Community Engagement early in the design and implementation of research studies (both preclinical and clinical), these important factors may be considered and hence, potentially avoiding bias and discrimination against typically underrepresented groups and improving the relevance of the research being conducted.
An analysis of the views of preclinical researchers into the challenges regarding patient and public involvement.
Engagement has been observed to enhance research in various ways including increased study relevance, improved trial recruitment and retention. Key reported benefits of patient engagement included mutual learning opportunities, establishing new collaborations, and improved research efficiency.
Patient engagement can inform patient and provider education and policies, as well as enhance service delivery and governance.
PCORI centres patients in their approach to research. PCORI has decades of experience developing principles for and focusing on inclusive and equitable engagement of patients on research teams. This guide provides principles and guidance on engaging patients on advisory boards. Don’t forget to check out additional resources on the PCORI website.
The table from the article ‘Is it worth doing?’ contains 9 categories of impacts identified through literature reviews that measure the impact of patient and public involvement in research.
This animation explains why core outcome sets are needed, what they are and how they are developed.
A short introduction of the essentials of a community-based approach to research, including its definition, functions, phases, and applications.
This Framework is designed to establish key concepts, principles and areas for patient engagement to be adopted by all SPOR partners. Reviewing page 10 (Appendix 1) is specifically recommended.
A workbook to guide the development of PEIR Plan based on a research article (by Hamilton et al., 2017). The PEIR Framework includes eight components that outline meaningful engagement in research from the perspectives of patient and community partners. Sample questions are provided for each component.
Overview of the History of Patient and Community Engagement in Research
Historical Explanations (From Past to Present Effects)
The lived experience as a person with an illness or injury or the caregiver or family member of such a person is incredibly valuable, and contributions of these partners should be recognized accordingly. PCORI explains what an engagement plan is and how researchers can engage patient partners.
The introduced community-engaged research navigation (CEnR-Nav) program provides a model for successfully engaging basic scientists with communities to advance and accelerate translational science, which is aimed at translating results in basic research into results that directly benefit humans.
The CTN provides practical information on ‘why’ patient and community-engaged research is important and ‘how to’ successfully integrate people with lived experience in research teams, identification of principles for mutual learning to improve research design and execution, and building trust and support for the research enterprise.
Includes information, tools, and resources
This document is intended as a reference guide for public health practitioners, who need support in adopting or revising a community engagement strategy with health equity and social determinants of health components. It is designed to make it easy for any project to be matched to a relevant framework.
This comprehensive resource explains the five steps of patient engagement in health research, including Why, Who, How, Engage, and Evaluate.
This guide will help you explore options for participatory approaches and engagement methods at various stages of research, and various levels of patient and public partner involvement.
This planning template walks through a number of areas to consider when planning to engage patient and public members as part of research, including the Why, Who, When, What, and How.
This narrative review identifies, quantifies and summarizes (a) the conceptual foundational principles of patient stakeholder engagement in research and (b) best practice activities to support these efforts.
The Engage with Impact Toolkit has been developed as a series of 5 modules to help scientists and organizations evaluate the impact of their patient, family and caregiver engagement programs and activities.
Developed by the Community Based Research Team at Access Alliance Multicultural Community Health Centre. Sections to consider: “Developing & Maintaining Partnerships; Promoting Equitable Collaboration; pp. 41-47”
Sections to consider: “Sharing Space & Power; How to Do Allyship; pp. 8-15”
This exercise helps individuals explore areas where they experience advantages and/or disadvantages in their lives with an EDI lens.
This toolkit will help you understand what research is and how it is the same or different from the inquiry we do in our daily lives. The information in the toolkit will introduce you to the different phases and components of research in simple everyday language in a way that even people with low education can understand.
OSSU provides a wide range of resources to help research teams conduct patient-oriented research, including presentations on how researchers can partner with patients, tools to evaluate the partnership experience, links to external patient-oriented tools and more.
SPOR Evidence Alliance works towards creating a collaborative research environment that is focused on patients and health system decision-makers as part of Canada’s SPOR initiative.
A list of resources and tools on topics such as engagement planning, related forms, engaging different populations, and success stories.
A repository of tools and resources on various patient and community engagement topics and includes many relevant toolkits.
Includes 10 briefing notes for researchers with practical information on how to involve members of the public in research.
This research article demonstrates a multidimensional framework for patient and family engagement in health and health care.
One-pager example on applying PaCER (Patient and Community Engagement Research) approaches to describe the ICU experiences of critically ill patients and their families, and to identify opportunities to improve ICU care.
This repository is broken into three main sub-communities, which are further organized into separate categories. These categories contain a variety of resources and materials related to community-based research.
Tools for researchers to help them:
– Distinguish between and define sex and gender in health research;
– Identify sex and gender differences in the mechanism, disease or treatment under study;
– Identify methods for integrating sex and gender variables in health research contexts; and
– Assess a research protocol or publication based on the integration or omission of sex and/or gender.