Resources for Getting Involved and Involving Others
The Effective Health Care (EHC) Program seeks the involvement of a wide range of stakeholders throughout the research process. AHRQ firmly believes that involving stakeholders from the beginning improves research results, and helps ensure that findings are relevant to users’ distinct concerns and have applications in real-world situations. This page links to resources for getting involved in the EHC Program, resources to help researchers involve patients, consumers, and others stakeholders, and ongoing work on methods for public and stakeholder engagement. Many of these resources have been developed by the AHRQ Community Forum.
How To Get Involved in the Effective Health Care Program: A Concise Guide for Stakeholders
This concise guide (PDF, 1.1 MB) highlights opportunities for taking part in the EHC Program. You can find out how to get involved and what you can expect throughout the process. This information is also summarized in the following brochures: Opportunities for Involvement (PDF, 233 kB); Life of a Topic (PDF, 229 kB).
In addition, you can use the following links to:
- Suggest a topic for researchers to study.
- Make comments on the key questions that researchers plan to ask in a study.
- Make comments on the draft reports before the researchers publish them.
- Submit scientific information packets to researchers. These packets provide detailed information related to the specific comparative effectiveness research questions.
- Contact us to suggest research priorities or to volunteer to help researchers refine research ideas, develop a research approach or shape research products and tools.
- Use our research summaries and other materials and recommend them to others
- Share your success stories using EHC Program Research, Products, and Tools.
The AHRQ Evidence-Based Care (EBC) Challenge
The EBC Challenge involved nurse practitioners and physician assistants in integrating AHRQ’s research products in their convenience healthcare practice. Teams competed in translating AHRQ research reports into innovative, provider-friendly resources for use in retail settings. The challenge was conducted from June 18 through October 19, 2012.
Learning Modules: Engaging Stakeholders in the Effective Health Care Program
This set of four learning modules provides researchers with information and tools for engaging a broad range of stakeholders in the Effective Health Care Program.
The Facilitation Primer: Strategies, Tools and Resources to Get You Started
This introduction (PDF, 463 kB) to meeting facilitation focuses on how to work with diverse stakeholder groups. It includes planning and preparation, and ways to address specific challenges facilitators may face during a meeting.
Table: Engaging Stakeholders to Identify and Prioritize Topics for Future Research
This table (PDF, 133 kB) summarizes recommended activities for researchers who wish to involve stakeholders in efforts to identify and prioritize topics for future research. It can be used as a planning guide or reporting checklist.
Engaging Patients in Information Sharing and Data Collection: The Role of Patient-Powered Registries and Research Networks
"Patient-powered” patient registries (PPRs) and research networks (PPRNs) are distinguished from traditional researcher-generated registries in that these registries (or networks) and the research they yield are managed with significantly greater input from patients, family members, and their representatives. This white paper (PDF, 564 kB) assesses the progress of these efforts to date and serves as a resource for those becoming involved in the development of PPRs and PPRNs. A Web version of this white paper is available on the NCBI Bookshelf.
Summary: Supporting Patient and Consumer Involvement in Patient-Centered Outcomes Research Workshop
This summary (PDF, 687 kB) of a July 13, 2011 panel presents techniques and resources to identify patient and consumer representatives to contribute to all phases of research; ways to provide support and training to facilitate their involvement throughout the process; and strategies for partnering with patients and consumers in the translation and dissemination of research products.
Webcast: Insights from Patients and Consumers Involved in Research
In this webcast of October 13, 2011, presenters discuss techniques and resources to involve patient and consumer representatives in all phases of research.
Online Course: Understanding Evidence-based Healthcare: A Foundation for Action
This web course is designed to help consumer advocates understand the fundamentals of evidence-based healthcare concepts and skills. Funded by AHRQ, the course was created by United States Cochrane Center as part of a project undertaken by Consumers United for Evidence-based Healthcare (CUE). Registration is free of charge.
Webcast: Community-Based Participatory Research: Lessons for Stakeholder Engagement in Patient-Centered Outcomes Research
In this webcast of June 19, 2013, experts in the fields of Community-Based Participatory Research (CBPR) and Patient-Centered Outcomes Research (PCOR) discuss ways in which lessons from CBPR can be used to enhance stakeholder engagement in PCOR, particularly in involving underrepresented populations in research.
Summary: Innovations in Stakeholder Engagement Conference
This report (PDF, 473 kB) describes presentations from the October 21, 2011 Innovations in Stakeholder Engagement Conference on topics including ways to use social media such as online communities, and implementing engagement techniques such as grassroots organizing and collaborative research methods.
Webcast: Innovations in Stakeholder Engagement Conference
In this webcast of October 21, 2011, presenters from public and private organizations describe promising technologies, activities, and other innovative approaches they have used to involve patients, consumers, clinicians and communities in their work.
Literature Review: Innovative Methods in Stakeholder Engagement: An Environmental Scan
This literature review (PDF, 524 kB) presents a summary of the state of the art in methods that organizations use to involve stakeholders – patients, consumers, practicing clinicians, payers, and others – in health care research and activities in related fields. Its objective is to identify strategies to enhance stakeholder involvement in AHRQ’s Effective Health Care Program and other health care research activities.
Webcast: Multi-Criteria Decision Analysis Techniques to Integrate Stakeholder Preferences in Comparative Effectiveness Research
The webcast from August 27, 2012 introduces the conceptual basis for multi-criteria decision analysis (MCDA) and describes how two preference elicitation techniques, Analytic Hierarchy Process (AHP) and Conjoint Analysis (CA), can be used to incorporate stakeholder preferences in comparative effectiveness research.
Public deliberation is a distinct approach to public consultation, where participants learn about and engage in reasoned discussion about a complex societal issue, and in doing so give decisionmakers insights into the values and concerns of informed members of the public.
These tools and resources were developed to assist individuals wishing to learn more and to apply deliberative methods for obtaining input on health topics from the general public. For additional information, visit the AHRQ Community Forum page.
This report presents the complete findings from an extensive review of the literature on the use of public deliberation methods on health topics. This review was conducted to inform the Deliberative Methods Demonstration conducted as part of the AHRQ Community Forum project.
- Public Deliberation Methods for Eliciting Public Input on Health Topics: Findings from a Literature Review
- Public Deliberation Methods for Eliciting Public Input on Health Topics: Findings from a Literature Review. Executive Summary
These Knowledge Briefs describe public deliberation, a distinct consultation method used to obtain considered and informed public input on complex societal issues. They are based on findings from the Literature Review on Public Deliberation Methods for Eliciting Public Input on Health Topics (see item above.)
- Knowledge Brief No. 1: Public Deliberation in Health Care
- Knowledge Brief No. 2: Methods and Measures of Public Deliberation
These materials describe AHRQ’s Deliberative Methods Demonstration, a trial comparing deliberative methods with one another and with a control intervention, in order to generate evidence on the effectiveness of deliberation and to obtain public input on questions related to the use of health research findings.
- Fact Sheet:The AHRQ Community Forum Deliberative Methods Demonstration
- Executive Summary: Community Forum Deliberative Methods Demonstration- Evaluating Effectiveness and Eliciting Public Views on Use of Evidence (PDF, 188 kB)
- Full Report: Community Forum Deliberative Methods Demonstration: Evaluating Effectiveness and Eliciting Public Views on Use of Evidence (PDF, 4.6 MB)
- Siegel JE, Heeringa JW, Carman KL. Public deliberation in decisions about health research. Virtual Mentor. 2013 Jan;15(1):56-64. PMID: 23356809.
- Wang G, Gold MR, Siegel J, et al. Deliberation: obtaining informed input from a diverse public. J Health Care Poor Underserved. 2015 Feb; 26(1):223-42. PMID: 25702739.
- Carman K, Mallery C, Maurer M, et al. Effectiveness of public deliberation methods for gathering input on issues in healthcare: results from a randomized trial. Soc Sci Med. 2015 May;133:11-20. PMID: 25828260. .
These materials describe online tools that can be used to support public deliberation. Online tools can be used to deliver educational materials, facilitate discussion, or for a variety of other purposes. Deme, a Web platform used in AHRQ’s Deliberation Methods Demonstration, is also described. This free, open-access platform is available to others to use or modify for their deliberative projects.
- Download the slide presentation (PDF, 1.9 MB), "Introduction to Online Tools to Support Public Deliberation" to learn more about online tools to support public deliberation and the Deme platform used in AHRQ’s Deliberative Methods Demonstration.
- Access written and video instructions for installing Deme and using it in your deliberative methods projects at: http://deme.stanford.edu. Deme was developed by the Center for the Study of Language and Information at Stanford University.
This presentation, from a December 6, 2011 webinar, discusses the use of deliberative methods to elicit the views of patients, consumers, caregivers, or other members of the community concerning health policy and healthcare issues. Topics include how deliberative methods vary from more traditional methods of obtaining public views, defining features of deliberative methods, and issues that are appropriate for deliberation.
This “how-to” webinar from April 19, 2012, provides practical guidance for those interested in using deliberative methods for obtaining meaningful public input to inform their work. The webinar covers setting clear goals for a deliberative session, recruitment, design, developing educational materials, facilitation, and synthesizing outputs.
- Using Deliberative Methods to Engage the Public: How to Design and Implement an Effective Deliberative Session
This webinar from June 13, 2013, provides practical guidance on facilitating deliberative sessions, focusing on techniques and tools to organize discussion, broaden participation, and manage the differing perspectives that are the goal with deliberative processes. Information presented in this webinar builds on the experiences from AHRQ’s Community Forum Deliberative Methods Demonstration.