Patient, Family, and Stakeholder Engagement

Building meaningful partnerships with patients and families and other relevant stakeholders is at the heart of person-centered care. A national leader in identifying practical, concrete ways for healthcare professionals and organizations to partner with patients, families, and other stakeholders, AIR developed the groundbreaking and widely cited framework for patient and family engagement.

Clinicians, researchers, administrators, funders, and federal and state government agencies across the nation use AIR’s cutting-edge research and tools, such as the Guide to Support Patient and Family Engagement in Hospital Quality and Safety and the Roadmap to Patient and Family Engagement in Healthcare Practice and Research, to engage patients, caregivers, families, and others in increasing quality and safety, improving outcomes, and reducing costs. AIR is also a leader in engaging patients and other stakeholders in healthcare research and performance measurement.

Latest Work

15 Oct 2020

Spotlight

AIR’s COVID-19 Response and Resources

On March 11, 2020, the World Health Organization declared the coronavirus outbreak a pandemic. This virus, also known as COVID-19, has dramatically changed the lives of people around the globe, touching all aspects of life, from health care to education to the economy. In this new world of rapidly changing information about the virus, AIR seeks to be a source of evidence-based information that examines and begins to understand the various complexities of this crisis.

Illustration of AIR expert Adaeze Enekwechi

26 Aug 2020

Q & A

Meet the Expert: Adaeze Enekwechi

As president of IMPAQ, a subsidiary of AIR, Adaeze Enekwechi, Ph.D., M.P.P., leads the strategy and technical oversight of all projects and services across all areas of the company, including health care, workforce development, social programs, and international development. In this Q&A, she talks about her work and why she went into public service.

21 Apr 2020

Q & A

Meet the Expert: Yael Harris

Yael Harris leads research projects to advance access, quality, payment reform, and other policies to transform health care delivery. She is involved in a wide-ranging set of health-related projects, including the Agency for Healthcare Research and Quality Quality Indicators, the Strong Start for Mothers and Newborns Evaluation, and Project Talent. Learn more about her and her work in this Q&A.

4 Feb 2020 | 12:00 PM - 1:00 PM

Event

Putting Patient-Centered Measurement Principles Into Practice

With funding from the Robert Wood Johnson Foundation, AIR funded four small-scale pilot projects to implement the five principles for patient-centered measurement. These principles define the essential elements of patient-centered measurement as: co-created, patient-driven, holistic, transparent, and comprehensible and timely. On Tuesday, Feb. 4, AIR hosted an online panel discussion with the pilot teams.

Project

Emergency Triage, Treat, and Transport Learning System

Currently, Medicare only pays for emergency ground ambulance services when beneficiaries are transported to specific types of facilities, most often a hospital emergency department, creating an incentive to transport all beneficiaries to the hospital even when more appropriate alternative treatment options are available. AIR is contributing to the development of a learning system funded by the Centers for Medicare & Medicaid Services to support a model designed to give ambulance care teams greater flexibility to address emergency care needs of Medicare fee-for-service beneficiaries following a 911 call.

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19 Jul 2019

In the Field

The Quest to Connect Patient and Family Engagement to Health Care Quality and Safety

AIR has been a leader in the evolution of patient and family engagement as a key quality improvement strategy. In this Q&A, Thomas Workman, principal researcher at AIR, shares his insights about the current state of health care safety and patient and family engagement—and where we’re headed.

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Project

Partnership for Patients: Patient and Family Engagement in Hospital Care

In a project for the Centers for Medicare and Medicaid Services, AIR developed tools and strategies to help hospitals effectively engage patients and families, with the goal of improving safety in health care across the country. AIR developed the Strategic Vision Roadmap for Person and Family Engagement to help these networks and hospitals implement, sustain, and evaluate engagement activities.

18 Jun 2018

Journal Article

A New Framework for Patient Engagement in Cancer Clinical Trials Cooperative Group Studies

This commentary, published in the Journal of the National Cancer Institute, describes the authors' experience designing and pilot testing a new framework for patient engagement at SWOG, one of the largest cancer clinical trial network groups in the United States and one of the four adult groups in the NCI’s National Clinical Trials Network.

Project

Evaluation of San Francisco City Option Medical Reimbursement Account Program

The San Francisco City Option’s medical reimbursement account (MRA) program reimburses eligible expenses to make healthcare affordable for employees who live in and around San Francisco. AIR is evaluating the program in order to help the SF City Option program gain a better understanding of who participates, how to increase consumers’ awareness of their benefits, and how to help consumers access benefits.

Project

Patient-Centered Measurement Pilot Projects

AIR developed the Principles for Making Health Care Measurement Patient-Centered to offer a vision of measurement that is patient-driven, holistic, transparent, comprehensible and timely, and co-created with patients. With support from the Robert Wood Johnson Foundation, AIR launched small-scale pilots to demonstrate how to implement the principles in real-world settings.

Project

Building the Science of Engagement

The Patient-Centered Outcomes Research Institute (PCORI) engages patients and other stakeholders in all phases of comparative clinical effectiveness research and patient-centered outcomes research. This qualitative study for PCORI—Research Portfolio Data Mining, Engagement Rubric Evaluation, and Adaption—seeks to understand whether engagement of patients and other stakeholders changes the course of PCORI-funded studies, and if so, how.

Project

Research Fundamentals and Training for Multi-Stakeholder Research Teams

Engaging patients and other stakeholders to participate as partners in all phases of patient-centered outcomes research is new to many academic health researchers. AIR is developing two online learning programs to help stakeholders, researchers, and research teams build knowledge and skills.

17 Jul 2017

Spotlight

Placing Patients at the Center of Health Care

Longstanding debate about how to ensure and measure excellent healthcare abounds. Increasingly health professionals, insurers, researchers and, indeed, patients and families, are recognizing that health care is better when patients’ needs are placed at the center of the decision-making process. How can we capture patient voices in ways that can improve healthcare delivery, cost, and outcomes? How do we measure what matters to the person who becomes a patient when illness strikes?

Project

Principles for Making Healthcare Performance Measurement More Patient-Centered

"How would health care measurement look different if it reflected what patients say they need and want?" In September 2016, AIR hosted a two-day, in-person meeting devoted to answering this question, exploring ways to drive progress toward patient-centered measurement—health care measurement driven by patients’ expressed preferences, needs, and values that informs progress toward better health, better care, and lower costs.

Project

PCOR Translation Center

The Patient-Centered Outcomes Research Translation Center supports PCORI's commitment to making research findings comprehensible and useful to patients, clinicians, and others in making healthcare decisions. Drawing on AIR’s expertise in health communications, health literacy, dissemination, medicine, health services, public health, health disparities, and methods for comparative effectiveness research, the Center prepares summaries of peer-reviewed PCORI study findings.

5 Apr 2016

Journal Article

Understanding an Informed Public’s Views on the Role of Evidence in Making Health Care Decisions

Deliberating the pros and cons of medical evidence to govern treatment decisions decreases the public’s willingness to rely solely on patient choices, especially when those choices can harm the individual or the larger community.

Project

Improving Consumer Engagement with the New Mexico Health Insurance Exchange

Many lower-income New Mexicans eligible for subsidies—especially racial/ethnic minorities and those living in rural areas—didn’t initially sign up for coverage when it was offered in 2014. AIR and its research partner assessed why and recommended how New Mexico could tailor outreach and support increased enrollment.

Project

Building the Medical Information Commons: Participant Engagement and Policy

Many public and private initiatives are underway to collect and share genomic, personal, and medical data on a massive scale for research and clinical use. Through a National Human Genome Research Institute project, AIR supported the Baylor College of Medicine in using deliberative methods to obtain informed public input on the values, rights, and interests of individuals whose data may populate the information commons.

7 Aug 2015

Toolkit

Tool to Improve Health Insurance Marketplace Consumer Experiences

How can the Health Insurance Marketplaces improve consumers’ experiences when shopping for, selecting, and enrolling in affordable health plans during future open-enrollment periods? To help answer this question, AIR developed the Marketplace Survey Improvement Guide. The Guide provides seven evidence-based strategies that will help Marketplaces improve the consumer experience by giving consumers accurate and relevant information in a timely manner and helping consumers understand and use that information.

14 Jun 2015 | 4:30 PM - 6:00 PM

Event

Panel: Results of the Community Forum Demonstration

Public deliberation is a unique way of convening a diverse group of citizens to consider an ethical or values-based dilemma and then weigh alternative—often competing—views. Funded by the Agency for Healthcare Research and Quality, the AIR study is the first large-scale randomized controlled trial of alternative methods of public deliberation exploring the views about the role of medical evidence in treatment decisions.

15 May 2015

Journal Article

Effectiveness of Public Deliberation Methods for Gathering Input on Issues in Healthcare: Results from a Randomized Trial

The U.S. health care system’s complexity, coupled with the emotional and personal nature of serious illness or injury, often makes it difficult for policymakers to obtain informed public views to help guide decisions on complicated health care issues. This study found that public deliberation, which encourages people to become informed about a topic and consider alternative perspectives, shifted participants' attitudes about the importance of medical evidence in treatment decisions.

8 Apr 2015

Fact Sheet

Public Deliberation: Bringing Common Sense to Complex Health Policy Issues

New research indicates it is an effective way to gather informed public views on complex health policy and to help guide policy decisions. This fact sheet provides an overview of public deliberation—convening a diverse group of citizens to consider an ethical or values-based dilemma and weigh alternative views—and what evidence says about its effectiveness.

5 Mar 2015

Spotlight

First Do No Harm: Patient Safety Awareness

Public awareness of patient safety issues – from surgical errors to miscommunications and misdiagnoses – has grown dramatically. The greatest advances in safety encourage patient engagement, systems improvement, more effective communication and better risk assessment.

22 Oct 2014

Brief

A Little Knowledge Is a Risky Thing: Wide Gap in What People Think They Know About Health Insurance and What They Actually Know

Under the 2010 Affordable Care Act, millions of Americans gained health coverage in 2014. Coverage is key to accessing affordable, high-quality care, but consumers who struggle to understand how health insurance works and how to estimate out-of-pocket costs are at risk of going without needed care even if they are covered. This brief outlines identifies what health insurance aspects pose the greatest problems for consumers, which groups need more assistance to enroll and use benefits, and what topics and skills consumer-counseling efforts should focus on.

14 Oct 2014

Report

Development of the Health Insurance Literacy Measure (HILM): Conceptualizing and Measuring Consumer Ability to Choose and Use Private Health Insurance

Understanding health insurance is central to affording and accessing health care in the United States. Efforts to support consumers in making wise purchasing decisions and using health insurance to their advantage would benefit from the development of a valid and reliable measure to assess health insurance literacy. This article reports on the development of the Health Insurance Literacy Measure, a self-assessment measure of consumers' ability to select and use private health insurance.

Project

Center for Patient and Consumer Engagement

The Center for Patient and Consumer Engagement was created by AIR to advance the knowledge and practice of patient and consumer engagement in health care. CPCE strives to provide resources and share knowledge to further the science and application of patient and consumer engagement; and to create a virtual community where knowledge of effective approaches to patient and consumer engagement can be shared, discussed, and further advanced by a broad group of stakeholders.

Project

Measuring Health Insurance Literacy

Health insurance coverage is key to accessing affordable, high-quality care. But do most Americans have the knowledge and skill they need to navigate or get the most out of their insurance plans? To answer this question, AIR researchers developed The Health Insurance Literacy Measure©, which consists of 21 self-report questions assessing self-confidence and behaviors associated with choosing and using health insurance.

Project

Testing Evalue8 Measures for Consumers

By 2016, consumers shopping on the online Health Insurance Marketplaces created under the Affordable Care Act will have the opportunity to compare health plans using information from the Quality Reporting System. Although it is currently undergoing development, there is considerable debate as to what measures consumers would find most useful when comparing and selecting health plans. AIR is evaluating these measures to see how well they meet consumers' needs.

Project

Innovative Patient Engagement Strategies

Engaging people as partners in their care and decision making can increase the likelihood that they will follow through on actions critical to attaining positive health outcomes. AIR conducted site visits to several accountable care organizations and primary care settings around the country to observe provider strategies to increase patient involvement and engagement.

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Patient engagement group collaborates to create roadmap

Project

Roadmap Guides Patient and Family Engagement in Healthcare

Growing evidence shows that patient and family engagement plays a central role in improving health outcomes while also improving the patient experience of care and reducing costs. The Roadmap for Patient and Family Engagement in Healthcare Practice and Research includes specific actions that can be taken to partner with patients and their families to improve how care is delivered.

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doctor testing young woman's glucose level

Project

Understanding Barriers to Testing for Women with Gestational Diabetes

Nearly 10 percent of pregnant women develop gestational diabetes, and up to 30 percent of those will develop Type 2 diabetes as they age. Yet many of these women do not check their blood glucose levels as often as they should. AIR researchers studied why women at high risk avoid testing.

8 Jun 2014 to 10 Jun 2014

| 8:00 AM - 2:00 PM

Event

AcademyHealth Annual Research Meeting

AIR will send experts in health care, health practice and health policy to the AcademyHealth Annual Research Meeting, June 8-10, 2014.

Project

Addressing Unnecessary Antibiotic Use in Nursing Homes

High rates of antibiotic use have been linked to the growth of healthcare associated infections as well as multi-drug resistant organisms—both of which can be life threatening to elderly patients. Along with a team of experts in nursing home care and antibiotic stewardship, AIR developed a guide that will provide nursing homes with a set of easy to use tools to implement antimicrobial stewardship practices.

Project

Measuring Attitudes about Patient-Centered Comparative Effectiveness Research

AIR developed and conducted three national surveys of patients and caregivers, clinicians, and researchers for the Patient Centered Outcomes Research Institute to assess stakeholder awareness and interest in engaging in patient-centered comparative effectiveness research. The goal is to improve informed decision-making by answering questions that matter most to patients and clinicians.

Project

Care Coordination Measure Development

Care coordination involves deliberately organizing patient care activities and sharing information among all of the participants concerned with a patient's care to achieve safer and more effective care. For the Agency for Healthcare Research and Quality, AIR developed, tested, and validated the Care Coordination Quality Measure for Primary Care (CCQM-PC), a survey-based assessment of the quality of care coordination for adults in primary care settings.

Project

Community Forum Deliberative Methods Demonstration

Growing evidence indicates that informing and engaging the public—both as patients and as citizens—can help achieve better care, better health, and lower costs. AIR research, conducted as part of the Agency for Healthcare Research and Quality Deliberative Methods Demonstration, found that public deliberation is an effective way to gather informed public views on complex health policy issues, such as the role of medical evidence in treatment decisions.

23 Nov 2012

Report

Giving Voice to the Vulnerable: The Development of a CAHPS Nursing Home Survey Measuring Family Member Experiences

This survey was developed to measure family member experiences of nursing home care, the results of which will contribute to the understanding of quality of care in nursing homes. Unlike other CAHPS surveys, the CAHPS nursing home family member survey was developed to solicit information from respondents who do not directly receive care.

Project

Increasing Use of Maternity Care Public Quality Reports

Consumers typically don’t consult public reports of healthcare quality when choosing providers or making treatment decisions. AIR developed and evaluated an intervention to help pregnant women better understand and more effectively use maternity care quality information.

Project

Support of Transparency Efforts by the U.S. Preventive Services Task Force

The mission of the U.S. Preventive Services Task Force (USPSTF), an independent panel of experts in prevention and evidence-based medicine, is to make evidence-based recommendations on clinical preventive services and health promotion. Since 2010, AIR has collaborated with the Agency for Healthcare Research and Quality, which supports the USPSTF, on the Transparency Project to facilitate task force efforts to incorporate public feedback and ensure transparency.

Project

Guide to Support Patient and Family Engagement in Hospital Quality and Safety

Research shows that when patients are engaged in their health care, it can lead to measurable improvements in safety and quality. To promote stronger engagement, AIR led a team to develop, implement, and evaluate a Guide to Patient and Family Engagement in Hospital Safety and Quality for the Agency for Healthcare Research and Quality.

Project

Consumer Information for Formulary Decisions

AIR’s work to increase the transparency of evidence based information for consumers includes creating plain language materials to explain the evidence-based formulary decision process.

Project

Translating Comparative Effectiveness Reports for Consumers and Clinicians

For nearly a decade, AIR supported the John M. Eisenberg Center for Clinical Decisions and Communications Science at the Baylor College of Medicine in turning comparative effectiveness research results into practical information for decision making. Funded by the Agency for Healthcare Research and Quality, the Eisenberg Center translated and disseminated research findings for use by consumers, healthcare professionals, and policymakers.

Project

Aligning Forces for Quality

The Aligning Forces for Quality (AF4Q) initiative sought to lift the overall quality, equality, and value of healthcare in 16 communities across the country. AIR provided technical assistance to help the Alliances meet quality and cost goals by engaging consumers in their health and healthcare.

Project

The Communication Toolkit: Implementation and Evaluation of a Learning Collaborative

This California HealthCare Foundation-funded project extends AIR’s work to develop a Communication Toolkit to help employers and other organizations communicate with consumers about evidence-based health care and the importance of consumer engagement.

Project

Using Social Marketing and Community Engagement to Help Low-Income Children Get Ready to Read

In 2005, AIR was awarded a five-year grant from the Corporation for Public Broadcasting and the Public Broadcasting System to assist the two organizations in the planning and implementation of the Ready to Learn Outreach Grant. This innovative grant is designed to locate and connect children from low-income families, and parents and caregivers, with PBS programming and related assets as a means of helping children build their literacy skills.

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Project

The Communication Toolkit: Using Information to Get High Quality Care

The Communication Toolkit: Using Information to Get High Quality Care is based on AIR’s rigorous study of the challenges involved in disseminating information about evidence-based health care.

Project

CAHPS® Cancer Care Survey

The Cancer Care Survey is the first CAHPS survey designed for a specific illness. Created by AIR and the Mayo Clinic, the survey assesses the experiences of adults receiving cancer treatment in outpatient and inpatient settings, such as independent community oncology practices, cancer centers at community hospitals, and cancer centers at academic medical centers, including those designated as comprehensive cancer centers by the National Cancer Institute.

Project

Reducing Hospital Associated Infections (HAIs)

AIR and Carilion Medical Center worked together to identify the challenges of implementing patient safety initiatives to decrease hospital associated infections.

Project

Creation of a Cross-Specialty Surgical Version of the CAHPS Survey

AIR developed a survey to assess the quality of surgical care from the perspective of patients for the American College of Surgeons.

14 Aug 2009 | 12:00 AM - 12:00 AM

Event

AIR Experts Participate in National Conference on Health Communication, Marketing and Media

Experts from AIR presented the Communication Toolkit: Using Information to Get High Quality Care at the third National Conference on Health Communication, Marketing and Media.

Project

TRICARE Dental CAHPS Design, Implementation and Reporting

AIR developed and pilot tested a consumer assessment survey instrument for adults to provide information about the quality of TRICARE dental benefits as reported by enrollees in the TRICARE Dental Program (TDP) and the TRICARE Retiree Dental Program (TRDP).

15 Oct 2003

Report

Team Training in Health Care: A Review of Team Training and a Look Toward The Future

During the last few years, the medical field has developed several medical-team training (MTT) programs, some implemented in the military and some developed for commercial medicine. This paper reviews the evidence-base for two categories of MTT, simulator-based programs and classroom-based programs.