The Engagement Tool and Resource Repository for Patient-Centered Outcomes Research (PCOR) is sortable by tool/resource focus, health condition, stakeholder audience, targeted population, and phase of research in which the engagement occurred. Users can also use the keyword search box to find tools and resources by other parameters of interest. Tools that are included in the repository have been deemed valuable given their utility and experience-based foundation and we hope that others will learn from these resources and use them as guidance in their own PCOR work. To the extent you wish to make use of these materials in whole or in large part, please reach out to the content creator for permission. PCORI is not responsible for facilitating the connection between those using the repository and the content creators.

This section describes how PCORI created the repository. It provides information about our tool selection sample, inclusion/exclusion criteria, tool tagging definitions, and final selection processes. Although these tools have not been formally evaluated, PCORI staff vetted tools based on the criteria described below. Inclusion of tools in the repository does not imply endorsement by PCORI. We selected these resources to share with the field as experience-based tools that have the potential to spur idea generation and future innovation. Please click here for frequently asked questions regarding the Engagement Tool and Resource Repository for PCOR.

PCORI-Funded Awardees: If you would like to submit a tool developed through a PCORI-funded project for potential inclusion into the repository, please send your submission to [email protected].

We encourage innovative thinking surrounding how these tools can inspire other research and PCOR capacity-building efforts. Please share how these tools have been helpful in your work and other general questions about the repository to [email protected].

Tools in this repository are developed and provided by third parties. Opinions and information in this content are those of the third party and do not necessarily represent the views of PCORI. Accordingly, PCORI cannot make any guarantees with respect to the accuracy or reliability of the information and data in such content.

Tool Selection Sample and Selection Process

The repository includes tools and resources developed through PCORI-funded projects. Given the diverse focus areas of these programs, PCORI aims to provide the breadth and depth of tools focused on research engagement and capacity building across the lifespan of a project.

Any tools submitted as a final deliverable developed through the Eugene Washington PCORI Engagement Award Program were considered for inclusion in the tool repository. One of the core expectations of the Engagement Award program funding is to produce information and resources that can be shared broadly with the PCOR community for others to learn from.

Similarly, tools and resources developed by PCORI-funded Research Award teams to guide their patient and stakeholder engagement efforts were considered for inclusion.

PCORI staff considered how the resource may be shared publicly to disseminate information about, results of, and innovations coming from Engagement and Research Award projects. This includes considering whether the tools and resources can be used to inform or inspire the work of other teams in their own engagement efforts across various geographic areas, populations, conditions, and/or focus areas.

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Criteria for Tool Inclusion and Exclusion

We screen tools and resources for inclusion in the Engagement Tool and Resource Repository for PCOR using the following criteria:

Category Inclusion Criteria Exclusion
Engagement Focus
  • Tool explicitly describes or facilitates engagement in the preparation, conduct, or dissemination phases of PCOR.
  • Tool describes or facilitates engagement in healthcare program or intervention planning, implementation, and/or evaluation.
  • Tool will support authentic and meaningful engagement of patients and stakeholders in the preparation, conduct, and dissemination of PCOR.
  • Engagement in health research outside of PCOR
  • Engagement tool development for shared decision making
  • Engagement in patient preference studies
  • Tool primarily focuses on study objectives unrelated to engagement.
Tool Type
  • Tool will support the preparation, conduct, dissemination, and/or evaluation of PCOR capacity building and engagement.
  • Tool or resource was packaged as a training, roadmap, toolkit, guide, checklist, curriculum, model/framework, survey/questionnaire, interview guide, protocol, glossary, or template.
  • Peer-reviewed publication
Tool Completion
  • Tool is complete and is presented as a final version.
  • Tool is incomplete or in progress.
Adaptability
  • Tool can inform the work of other project teams and could be applicable to different settings.
  • Tool is not likely to inform the work of other project teams or be applicable to other settings.
PCORI Funded
  • Tool and/or resource was developed through a PCORI-funded Engagement or Research Award.
  • Tool and/or resource was not developed through a PCORI-funded Engagement or Research Award.
Practice-Based Foundation
  • Tool was developed based on best practices or practice-based findings.
  • Tool was not developed based on best practices or practice-based findings.


PCORI can provide additional information regarding the number of tools and/or resources screened upon request. Please send any questions or requests for more information to [email protected].

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Tool and/or Resource Tagging

After reviewing tools and resources meeting the inclusion criteria, we applied tags across five engagement-related categories, as applicable.

Tool and/or Resource Focus (not mutually exclusive)

This code captures how the tool or resource can be used to support engagement efforts in PCOR, including examples of the types of resources that may be created through the specified efforts.

Findings on Engagement, Capacity Building, and Dissemination This code includes lessons learned as well as findings from engagement, capacity building, and dissemination efforts that can guide users on and/or inform them about the preparation and conduct of engagement in PCOR.
Educational Materials This code includes all trainings and curriculum related to the preparation and conduct of PCOR from PCORI-funded Engagement and Research Awards.
Team Management This code captures tools or documentation supporting internal team management and communication, including patient and stakeholder partners, for a PCORI-funded Engagement or Research Award.
Event Materials This code captures tools or documentation supporting the facilitation or conduct of engagement activities both internal and external including team meetings, conferences, or workshops supporting PCORI-funded Engagement or Research Awards.
Study Outreach This code captures tools or documentation supporting external project communication, including project or evidence promotion, for a PCORI-funded Engagement or Research Award.
Evaluation Tools This code includes all evaluation efforts (e.g., surveys, assessments, focus group, or interview guides) that assess the effectiveness, impact, or influence of engagement conducted within a PCORI-funded Engagement or Research Award; also includes all surveys, focus group guides, and other data collection tools used to gather information in a project that is specifically focused on capacity building for engagement.
Engagement Approaches This code applies to products and tools developed for multidisciplinary teams to collaborate on setting priorities for research agendas, developing patient-centered outcome measures, or participating in any topic prioritization exercises. Could also be a tool that facilitates an engagement approach, such as mobilizing patient and family advisory committees or using community studio methods.

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Phases of Research (not mutually exclusive)

Phase(s) of research in which stakeholders were engaged as described in the tool and/or resource, if applicable.

Phase of Research in Which Engagement Occurs Description of Engagement Activities Example of Engagement Activities
Research Topic and Agenda-Setting Identifying, refining, and/or prioritizing topics and populations to study Providing insight about the concerns and priorities of the patient population or stakeholder groups
Research Questions and Aims Developing and/or refining the research questions and aims of the study Reframing aims of the research study to highlight health issues within certain communities
Study Comparators and Content Selecting, designing, and/or refining interventions to be tested in the study Altering delivery mode of intervention to be more appealing to patients
Study Outcomes Selecting and/or refining study outcomes and deciding how to measure them Selecting endpoints that are important to patients and other stakeholders
Study Design Contributing to a specific plan or protocol for conducting the study, including what inclusion criteria should be used to select participants; helping select what methods will be used to conduct the research Suggesting using a study design that takes patients’ preferences into account instead of using randomization, in order to better appeal to the study population
Participant Recruitment and Retention Refining approaches and/or materials for finding patients who are eligible to participate in the study, enrolling them into the study, and/or making it easier for them to participate and stay in the study Rewording the consent form to include clearer descriptions of study activities
Data Collection Developing and/or refining approaches and methods to best collect data from study subjects Improving the timing of data collection to better align with clinic flow
Results Review and Analysis Analyzing collected data or reviewing study results to help interpret and explain research findings Assisting with the transcription and coding of qualitative data; interpreting preliminary findings
Translation Applying study results to real-world practice, health condition management, policy, or future research Contributing to the development of clinical practice guidelines
Dissemination Planning, creating, and/or presenting materials that share information about the study or the results of the study Suggesting the best means of returning results and other study findings to study participants; giving presentations at conferences to spread results to a wider audience

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Health Conditions (not mutually exclusive)

The condition that was the focus of the Engagement or Research Award as described in the tool or resource, as applicable. View the complete list of health conditions in Explore Our Portfolio.

  • Allergies and Immune Disorders
  • Birth and Developmental Disorders
  • Blood Disorders
  • Cancer
  • Cardiovascular Diseases
  • Dental Health
  • Ear, Nose, and Throat Diseases
  • Eye Diseases
  • Functional Limitations and Disabilities
  • Gastrointestinal Disorders
  • Genetic Disorders
  • Infectious Diseases
  • Kidney Diseases
  • Liver Diseases
  • Mental/Behavioral Health
  • Multiple/Comorbid Chronic Conditions
  • Muscular and Skeletal Disorders
  • Neurological Disorders
  • Nutritional and Metabolic Disorders
  • Rare Diseases
  • Reproductive and Perinatal Health
  • Respiratory Diseases
  • Skin Diseases
  • Toxins
  • Trauma/Injuries
  • Urinary Disorders
  • Wellness
  • Other Conditions

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Patients and Public Stakeholders Involved (not mutually exclusive)

The patient and public stakeholders involved as the intended user of the tool and/or resource, as applicable. PCORI’s definitions of stakeholders can be found here.

Stakeholder Definition Includes Examples

Patients

Persons with current or past experience of illness or injury, family members or other unpaid caregivers of patients, or members of advocacy organizations that represent patients or caregivers

A man who has grown up with and still manages Type I diabetes, a young woman whose leg was amputated after a traumatic injury, a man with bipolar disorder; a woman providing hospice care in her home for her husband with advanced ALS, a man who drives his sister to her chemotherapy appointments and helps her complete household chores, siblings who take turns going to an assisted-living facility to visit their parents with dementia and coordinate their medical needs and manage their finances; the patient council leader for a national heart disease advocacy organization, the patient engagement specialist for a state-based newborn health coalition, the executive director of a stroke patient advocacy foundation who also has personal experience with strokes

Clinicians

Providers of health care in a clinical setting, including physicians, nurses, physician assistants, rehabilitative professionals, pharmacists, mental healthcare providers, complementary and alternative healthcare providers, and professional societies serving clinicians

Family physician in direct patient care in a small group practice, hospital floor nurse, psychologist in private practice, American Medical Association, and American Nurses Association

Researchers

Those who conduct clinical research, including investigators or funders of research and organizations or associations representing the research community

Research administrator at a private university, nurse researcher at a public nursing school, and program officer at a nonprofit research foundation

Purchasers

Those who purchase health benefits for employees and their dependents, including individual businesses as well as local, state, regional, and national business groups, coalitions that represent businesses, and health coalitions

Individuals or organizations such as owner of a family-run business, staff of a state chamber of commerce, or the health benefits manager of a large, ERISA-covered employer

Payers

Those who function as financial intermediaries in the health system, including private insurers and public insurers, and organizations representing insurers, such as America’s Health Insurance Plans

Chief medical officer of health insurance cooperative, claims adjuster at a large insurer, and policy analyst at an insurance trade association, the insurers BlueCross BlueShield, Medicaid, and Medicare

Industry

Companies that design, invest in, or manufacture diagnostics, devices, pharmaceuticals, electronic records systems, and mobile apps, and organizations representing the life sciences industry, such as the Advanced Medical Technologies Association

Chief medical officer of a device manufacturer, government relations staff at a diagnostics trade association, and research director for a pharmaceutical company

Hospitals and Health Systems

Organizations where care is delivered, including public and private hospitals and health systems, urgent care centers, retail health clinics, and community health centers, and organizations representing these facilities

Clinic administrator of a multispecialty physician practice, executive of a public hospital, research director at an integrated health system, and American Hospital Association or America's Essential Hospitals

Policy Makers

Those who help craft public policy at any level of government, including federal, state, and local government officials; federal, state, and local units of government; and organizations that represent policy makers

State Medicaid director, representative of the Office of the National Coordinator for Health IT, and policy analyst at the National Association of County and City Health Officials, and National Conference of State Legislatures and National Association of Counties

Training Institutions

Those that deliver health professional education include public and private universities and colleges, individuals affiliated with the delivery or administration of health professional education, and trade or professional associations representing these institutions, organizations, and individuals

Dean of a nursing school, director of a residency program, and manager of a provider of continuing medical education

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Populations of Interest (not mutually exclusive)

Populations of Interest is the target population for the project.

  • Racial and ethnic minorities
  • Older adults
  • Low income
  • Residents of rural areas
  • Women
  • Children
  • Individuals with special healthcare needs, including individuals with disabilities, individuals with multiple chronic diseases, individuals with rare diseases, and individuals whose genetic makeup affects their medical outcomes
  • Patients with low health literacy/numeracy and limited English proficiency
  • Lesbian, gay, bisexual, and transgender persons
  • Veterans and members of the armed forces and their families

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Frequently Asked Questions

Q. What is the purpose of the Engagement Tool Repository?
A. PCORI encourages users to explore the repository to find a tool that’s right for their particular audience and research engagement needs. Users can filter all items by intended use, health condition of interest, population focus, or target audience. It is also possible to search by keywords like training, social media, newsletter, survey, and conference proceedings. Please use these tools to inform and inspire future work, as well as elicit new ideas of ways to work with a multistakeholder team.

Q. What is included in this repository?
A. This repository contains tools and other resources such as PowerPoint decks, narrative reports, and how-to guides that help engage patients and other stakeholders in the planning, conduct, or dissemination of health research. These tools were created as part of a PCORI-funded Research Award or as a deliverable for a Eugene Washington Engagement Award.

Q. Who can use this repository?
A. All tools included in this repository are publicly accessible. It contains tools that can inspire or inform work that will help engage stakeholders, build capacity for research within a community, prepare partners to be contributing members of a research team, communicate with multistakeholder partners over the course of a research study, and more. Though PCORI has not tested the effectiveness of the tools included in this repository, they were selected and screened by an internal committee through a process described here.

Q. How are tools or resources added into the repository?
A. This repository contains tools developed through PCORI-funded Research and Engagement Awards exclusively. Users who are part of a PCORI-funded project team are invited to submit their tool by emailing [email protected]. The PCORI internal committee will review tools once a quarter and will alert research teams about inclusion once tools have been reviewed.

Q. How can tools and resources included in the repository be used by others?
A. The tools and resources included in the Engagement Tool and Resource Repository are developed by third parties (e.g. PCORI-funded research teams) and PCORI is not the copyright owner. PCORI makes these tools and resources available in the Engagement Tool and Resource Repository to inspire and inform future work. You may download these tools and resources for your personal use; however, you may not:

  • modify or adapt the tools and resources;
  • sell or otherwise make accessible for profit the tools or resources;
  • remove or obscure any notices on the tools or resources; or
  • reproduce, display, or distribute any tools or resources.

If you wish to have broader rights to use any tools or resources, please reach out directly to the copyright owner to request permission. PCORI is not responsible for facilitating communications between those using the Engagement Repository and third party copyright owners.

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Posted: September 11, 2019

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