the learning collaborative resource library

The Learning Collaborative is building from relationships made, resources shared, and lessons learned from our previous PCORI funded project, the Sages Symposium. This 3-day Symposium started a nationwide discussion among older adults and researchers about the benefits of engaged research and strategies to expand engagement within the aging-focused research community.

 

We've gathered this knowledge on PCOR concepts and tools for engagement into a Resource Library to provide on-hand references at your convenience.

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Understanding the risks and benefits of stakeholder engagement. (Engaged research 101)

Engagement Challenges, Strategies, and Resources, PCORI

PCORI collects information from partners and awardees to learn about the challenges that PCORI-funded study teams experience, and strategies they use to prevent or address these challenges. This information shows us that some challenges are shared by partners and awardees, while other challenges are unique to each group. Among partners, some challenges are more commonly described by patients and caregivers than by other stakeholders.

Patient and Stakeholder Engagement in Research: Making a Difference in PCORI Projects, PCORI

This webinar highlighted ways in which patients and other stakeholders are engaged in PCORI research projects and ways their involvement makes a difference. PCORI staff shared an overview of partners’ research activities and the impacts of those activities on PCORI projects and the people involved.

Value of PCOR Infographic, PCORI

This infographic created by the Pennsylvania State University Hershey Medical Center lists the benefits of engaging community health workers in your research.

Making Engagement Accessible

Supporting Virtual Meeting Accessibility, NCAPPS

Considerations and tips to support Virtual Meeting Accessibility

Effective Practices for Including People with Developmental Disabilities and New Members oN Boards and Committees

This plain-language guide, developed by the Green Mountain Self-Advocates, explains how to make board meetings and committees inclusive, supportive, and inviting spaces for people with different learning styles. It offers tips and suggestions for facilitation as well as recommended language.

Getting Your Message Across Communicating With People Who Have Intellectual Disabilities, Green Mountain Self-Advocates

This plain-language guide explains how individuals with intellectual and developmental disabilities understand disability and self-advocacy, to inform your new understanding. The guide also provides checklists and handouts for taking active roles in inclusion and self-advocacy allyship.

How to Make Surveys More Aphasia Friendly, BRIDGE

This tool from Building Research Initiatives by Developing Group Effort offers strategies for making your surveys more aphasia-friendly, including step-by-step instructions on how to embed videos, add closed captioning, and create answer options.

Communication Tips for Working with Older Adults, CJE Senior Life

Consolidated information from a variety of sources (listed at the end of this document) regarding how to communicate effectively with older adults in a range of circumstances.

Understanding key elements of stakeholder engagement

Stakeholder Engagement Resource Guide (Prepared by the university of Pittsburgh comparative effectiveness center) Jan 2015

A Stakeholder Engagement Resource Guide assists investigators in obtaining community feedback for their research projects. This downloadable guidance provides valuable information for establishing meaningful stakeholder involvement as research progresses through grant application to study design, protocol development, recruitment, and execution.

What is Patient Centered Outcomes Research?

A learning video created for the Aging PCOR Learning Collaborative that breaks down PCOR concepts and stakeholder engagement.

Research Fundamentals: Preparing You to Successfully Contribute to Research, PCORI

PCORI's new on-demand training is designed for those who want to learn more about the research process. Research Fundamentals is a self-paced training that uses plain language to describe patient-centered outcomes research. It can help everyone, regardless of experience, engage and contribute with confidence.

Engaging hard-to-reach patients in patient-centered outcomes research, Journal of Comparative Effectiveness Research

This study aimed to identify methods to engage hard-to-reach patients in the research process.

Engaging rural residents in patient-centered health care research, Patient Experience Journal

This article describes the process of engaging rural patients, caregivers and broader stakeholders to actively participate in an exploratory effort to understand rural perspectives around the patient-centered medical home model. Highlights of the project’s engagement activities demonstrate how giving voice to rural residents can have a significant impact. Lessons learned point to the importance of six factors for successful engagement.

Developing a proposal that includes stakeholder engagement in research

Budgeting for Engagement Activities, PCORI

To help applicants incorporate engagement into their study proposal and budget, this document presents guidance to help researchers identify budgetary items associated with engagement within a research study

Compensation Framework, PCORI

PCORI’s Compensation Framework provides guidance for establishing fair compensation levels for patients, caregivers, and organizations.

Optimizing Funding Applications Presentation, PCORI

This presentation from the National Organization for Rare Disorder, Rare Disease, and Orphan Product Breakthrough Summit, offers a step-by-step process for evaluating your funding proposal and optimizing it to include stakeholder engagement.

Identifying and outreaching to stakeholders

Initiating Partnerships for Patient-Centered Research, PCORI

Using data collected from research applicants, awardees, and partners, PCORI is sharing lessons about how researchers can engage with patients and other healthcare stakeholders to improve patient-centered research. This info sheet presents information from our portfolio about how research partnerships have formed.

Building Effective Multi-Stakeholder Research Teams, PCORI

Offers resources created to support all members of multi-stakeholder research teams in working together. 

The website is organized into two sections, each of which addresses a key area for success as an effective multi-stakeholder team: Engaging Stakeholders and Working as a Team. Each section includes evidence-based information and resources for team members to learn new concepts and skills.

Community Engagement in Research: Practical Tips for Researchers and Community-based Organizations, PCORI

In this webinar, PCORI-funded research teams shared practical tips and guidance for establishing partnerships between researchers and community-based organizations. Presenters discussed ways that community-based organizations can prepare for engagement in patient-centered research and share lessons learned that will be valuable to researchers for engaging with local organizations.

Developing and implementing a research advisory group or committee

CJE SeniorLife, Leonard Schanfield Research Institute. How to Talk About Research: A Training Toolkit for Nursing Home Residents And Stay-At-Home Elders. October 2017.

This toolkit provides examples of approaches, topics and activities used to train Sages during the two-year development phase of the Bureau of Sages at CJE SeniorLife. It is one example of how to prepare nursing home residents and older adults living with frailty at home for engaging with researchers. These examples may help others develop their own Bureau or similar advisory board of older adults.

Best Practices for Convening a Consumer Advisory Board, Center for Health Care Strategies

Key considerations for health care systems to convene and maintain a consumer advisory board.

REACHnet Engagement of Multiple Stakeholder Groups Webinar, PCORI

This REACHnet webinar discusses the strategies used both to develop multiple stakeholder groups and integrate their voices into research.

Creating orientation or training materials for stakeholders

The SEED Model’s Conceptual Model Training, PCORI

This deck was made to be adapted by different teams as a means of developing a research question and onboarding stakeholders.

Research Advocacy Training, PCORI

This deck from the Denver Health and Hospital Authority offers a model for orienting stakeholders around advocacy and participation on a stakeholder panel.

Train the Trainers Webinar, PCORI

This webinar, from the National Center on Health Research, intends to prepare researchers to train stakeholders as research advocates and in the basics of research.

HIPxChange Patient Advisor Toolkit

This toolkit offers modifiable resources for orienting patient advisors for work with researchers. Free registration required.

Working with stakeholders as co-principal investigators

“Older Co-researchers Exploring Age-Friendly Cities: An “Insider” perspective on the Benefits and Challenges of Peer-Research,” PubMed

This journal article describes a study that engaged older adults as co-researchers, reviews the engagement methods employed, and highlights the benefits and challenges of this engagement strategy.

Social Research and Co-Production with Older People: Developing Age-Friendly Communities, PubMed

This article explores the methods used to recruit and train co-researchers as well as reflects on the co-researcher process in an aging study.

Engagement Frameworks

PCORI Engagement Rubric

This Rubric offers 4 main principles upon which meaningful engagement should be based. It also specifies key areas of consideration, where these principles should be applied.

NHS INVOLVE Framework

This report offers helpful information about the strategic use of the NHS INVOLVE Framework, highlighting the goals and mission, strategy, and findings of stakeholder engagement.

PAE Attention Framework

This framework offers three axes to analyze and strategize stakeholder engagement. It is useful for identifying how people, approach, and environment will influence your work.

Arnstein’s ladder of participation

This graphic describes the continuum of engagement. It is of historical importance and is contemporarily useful in understanding the ethical commitments and foundations of stakeholder engagement.

UK Standards for Public Involvement

This document offers six standards that characterize meaningful stakeholder engagement. It also describes examples of what it looks like to employ the standards in your work.

Business for Social Responsibility 5 Step Approach

This document offers a strategic plan for implementing engagement, including planning through post-engagement follow-up.

Engaging Older Adults in Healthcare Research: A Realist Synthesis

This journal article uses the Canadian healthcare context to review the challenges and benefits of engaging older adults in healthcare research and develops a five-stage framework for engagement best practices.