The resources—which include implementation guides and toolkits, case studies, and other materials—are organized by each of the eight change strategies.
General ResourcesCreated by the American Institutes for Research, the goal of the Center for Patient and Consumer Engagement is to advance the knowledge and practice of patient and consumer engagement in healthcare. The Center provides resources and shares knowledge to further the science and application of patient and consumer engagement, and also creates a virtual community for learning and knowledge transfer.
The CFAH Engagement Behavior Framework assembles a list of measurable actions that individuals and/or their caregivers must perform to maximally benefit from the healthcare available to them. The framework provides a basis for concrete, measurable expectations for individuals' behavior that should guide the reorientation of care toward patient-centeredness.
Engaging Health Care Users: A Framework for Healthy Individuals and Communities is a framework developed by the American Hospital Association that embraces the need to engage patients and families and contemplates the role of hospitals and healthcare systems in improving the total health of the population and community they serve. The report includes case studies highlighting strategies that hospitals and healthcare systems have deployed to engage healthcare users.
Developed by the Center for Advancing Health (CFAH), this report discusses successful commercial, non-health related decision support tools to identify the variables for the success of these popular tools; and describes the implications of these findings for the development of healthcare decisions.
This report presents the results of an environmental scan that serves as an evidence-based foundation for the development of the Guide to Patient and Family Engagement in Hospital Quality and Safety. The intent of the environmental scan was to target topics and questions that are directly relevant to the goals of the project, reflect the concepts of consumer engagement and patient- and family- centered care around the issues of patient safety and quality in the hospital setting, and incorporate diverse input and perspectives from multiple individuals and organizations representing patients, families, health professionals, and hospitals.
This brief document contains six guiding principles for delivering patient-centered care with supporting outcome metrics. The six principles are linked to improved quality, safety, patient satisfaction and employee satisfaction.
Since 2009, Mind the Gap has been a consistent "voice" in the health care industry championing the evidence in support of the wide spread adoption of patient-centered care with a primary focus on communications. Mind the Gap Blog challenges the conventional disease-focused, biomedical approach to physician-patient communications in ambulatory and inpatient setting and provides practical, evidence-based strategies and tactics for improving physician-patient communications and engagement, much of which comes from the author's experience as a patient and care-giver.
This article proposes a framework with which to consider patient and family engagement as a promising pathway towards better quality healthcare, more efficient care, and improved population health. The authors present the forms engagement can take, discuss the levels at which patient engagement can occur across the healthcare system and the factors that influence whether and to what extent engagement occurs, and explore the implications of the multidimensional framework for the development of interventions and policies.
Safety Is Personal: Partnering with Patients and Families for the Safest Care is a call to action for health leaders, clinicians, and policymakers to take the necessary steps to ensure patient and family engagement at all levels of healthcare. This report identifies specific action items to work towards making patient and family engagement a core value in the provision of healthcare.
Patient and Family PreparationFree application for patient engagement. Patients or their caregivers can create or update a medication list through barcode scanning as wel as set up medication reminders, manage medication interactions, and receive reminders to take medications, among other features. The app can be accessed from any computer, smart phone, or tablet and is both HIPAA and CMIA compliant.
This series of resources and tools was developed for patients and their caregivers or care partners to use when planning for care or during a stay in a hospital or skilled nursing facility. The goal is to support patients, their care partners, and the team of healthcare providers to all be "on the same page" in understanding the patient's health and healthcare needs when the patient is transitioning from one setting of care to another.
A free website suggesting 6 roles family and friends can play (even from a distance) to support their loved ones in being empowered from the moment of diagnosis through treatment and home recovery. A resource page of forms, checklists, and websites that support each role is included
The Coordinated-Transitional Care (C-TraC) program is a low-resource, registered nurse telephone-based initiative that was developed and tested in the William S. Middleton Memorial Veterans Hospital in response to the Affordable Care Act’s call to disseminate effective and cost-efficient transitional care programs that improve patient safety and post-discharge outcomes. The program involves a nurse care manager working with patients in the hospital prior to discharge, and completing a series of phone calls with the patient post-discharge.
Engaged Patients is a national campaign under the guidance of the Empowered Patient Coalition to provide patients and their loved ones with the resources to be fully informed and participating members of their health care teams. The website offers a comprehensive hospital guide, a patient journal, a patient decision support web-based app, and dozens of other resources which were developed by, and for patients.
Free book on how to promote patient advocacy to put patients first.
The free form organizes the patients' story and history in a manner attuned to the expectations of the physician, so to complete the pre-diagnosis story without interruption. Also suggests patient request and retain their records and ask, "What else could it be?", all to get an accurate diagnosis & understand follow up.
This resources page from the Agency for Healthcare Research and Quality (AHRQ) offers the latest evidence-based information for improving patient health. It provides useful information and resources for patients and consumers on care planning, diagnosis and treatment, patient involvement, and prevention and health.
This patient passport provides an easy-to-use vehicle for capturing patients' personal preferences as they relate to their health care, their health and well-being, and their goals. Available in both hard copy and electronically as a free app at doctella.com, the tool encourages a more holistic approach to healthcare by imparting crucial self-reported patient information that extends beyond vital signs, diagnoses and medication records.
The Society for Participatory Medicine is devoted to promoting the concept of participatory medicine, a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners. The society runs a blog, e-Patients.net, which publishes the latest news and information about participatory medicine as well as a journal, Journal of Participatory Medicine, a peer-reviewed publication including opinion, evidence, and perspective.
Also related to: Clinician and Leadership Preparation.
In a partnership between the Patient-Centered Primary Care Collaborative (PCPCC) and the American Cancer Society, the PCPCC developed three fact sheets that aim to help patients with cancer better communicate with their primary care and oncology team during initial diagnosis, treatment, and as survivors of cancer. The fact sheets are designed to help patients understand the basic roles of the medical home specific to cancer prevention, treatment, and survivorship and are accompanied by a three-part webinar series.
The Communication Toolkit is designed to help organizations communicate with its employees or members about getting good quality healthcare, making better healthcare decisions, and being informed and engaged in their health and healthcare. The Toolkit contains educational materials for employees or members along with guidance for organizations about how to effectively use the materials.
The Family-Centered Rounds Toolkit is a collection of materials that document the development and implementation of a feasible and sustainable intervention to improve family engagement during family-centered rounds (FCR), which includes an FCR checklist and associated training curriculum. Versions tailored to researchers and clinicians are available on the website.
Free online book on how Information Therapy can help to heal an ailing healthcare system.
Clinician and Leadership PreparationThis resource gives hospital and health system leaders concrete, practical steps grounded in evidence-based research to improve patient and family engagement. It focuses on assessing how well the organization is doing, identifying processes and systems to support patient engagement, ensuring staff obtain training for effectively using these systems and processes, intervening to overcome specific obstacles that may emerge, and monitoring progress toward achieving goals.
Also related to: Care and System Redesign.
A nationwide challenge to physicians and key stakeholders to commit to adopting one new patient-centered communication skill a year beginning in 2014. The program is free for many, includes a comprehensive evaluation of their patient communication skills (using recognized communication research methods), detailed summary of findings, tailored online communication skills development for participants and ongoing, online support. Year over year assessments enable participants to track year over year progress in skills development.
This resource from the Institute for Patient- and Family-Centered Care (IPFCC) offers guidance to hospitals on how to begin advancing the practice of patient- and family-centered care and create effective partnerships with patients and families. The guide includes an assessment tool, a case study, and select print and web resources.
Also related to: Care and System Redesign and Organizational Partnerships.
This resource from the Institute for Patient- and Family-Centered Care (IPFCC) offers guidance to primary care and other ambulatory healthcare providers on how to begin advancing the practice of patient- and family-centered care and create effective partnerships with patients and families. The guide includes an assessment tool, practical guidance for beginning the process, and select print and web resources.
Also related to: Care and System Redesign and Organizational Partnerships.
BirthTOOLS.org is a toolkit to promote care practices that support physiologic birth that has been developed for use by maternity care professionals. Aimed at clinicians and hospital staff who provide care and maternity unit leadership, this toolkit includes a synopsis of the evidence base and offers targeted resources, protocols, and other materials to assist clinicians and healthcare systems in implementing best practices that promote physiologic birth.
Also related to: Care and System Redesign
The Institute for Healthcare Communication (IHC) offers brief, accredited experiential workshops to help clinicians and healthcare teams communicate more effectively with patients and families and within healthcare teams.
This white paper describes how imperative it is for the nursing profession and the Nursing Alliance for Quality Care to focus on patient engagement. The purposes of this paper are to propose a strategic plan that encourages nurses' support of patient engagement, to delineate the empirical case for the proposed strategic plan, and to secure the participation of organizations, nurses, and stakeholders in the implementation of the plan.
This toolkit is designed to help adult and pediatric practices ensure that systems are in place to promote better understanding by all patients, not just those who practices think need extra assistance. The toolkit is divided into manageable chunks including a quick start guide, path to improvement, 20 tools, and appendices.
Also related to: Care and System Redesign.
A report by Center for Advancing Health (CFAH) to gather the reactions of key healthcare stakeholders on patient engagement and to explore areas of consensus that can be instrumental in increasing the extent that patients are engaged in their care. The report also collects stakeholder perspectives on various investments in engagement interventions and barriers encountered.
Also related to: Care and System Redesign and Organizational Partnerships.
As part of Patient-Centered Care Awareness Month, Planetree has released a number of “partnership activation tools” available to support both healthcare professionals, and patients and family members in partnering more effectively with each other. In addition, Planetree has provided a series of recorded webinars to support the implementation of patient-preferred practices.
Also related to: Patient and Family Preparation and Organizational Partnerships. .
This set of resources from the American Hospital Association in partnership with the Institute for Family-Centered Care provides strategies for establishing patient- and family-centered care aimed at healthcare leaders and clinician practitioners. The toolkit includes a video, video discussion guide, resource guide, and hospital self-assessment tool.
Care and System RedesignCentering is a team approach to care that actively engages patients in goal setting, skill-building, and peer support. The model includes three components of care: assessment, learning, and community building. It has been nationally recognized by leading healthcare experts because of improved maternal child outcomes including preterm birth rates, low birth weight rates, and breastfeeding rates.
These guidelines lay out recommended changes for hospital “visiting” policies and practices. They are the product of a working group formed by the Institute for Patient- and Family- Centered Care (IPFCC) composed of healthcare leaders, staff, and patient/family advisors, all with expertise in patient- and family-centered care.
Understanding the patient safety climate of hospitals from the perspective of patients or their families can be a valuable step towards improving patient safety. This questionnaire is the first instrument, to our knowledge, that evaluates the patient safety climate of hospitals from the viewpoint of patients or families.
A web portal of resources directed at care teams on the topic of patient engagement.
Qualis Health has published an online toolkit that provides a practical, low-cost approach to engaging patients, families and frontline hospital staff in infection control. Tested and refined in real-world environments at multiple hospitals, the toolkit provides a step-by-step roadmap for implementing an innovative "hand hygiene huddle" with patients and their families early in a hospital stay. Features include a step-by-step implementation roadmap with linked resources, commentary from subject matter experts, and videos of hospital teams describing their implementation successes.
This Guide to Patient and Family Engagement in Hospital Quality and Safety, developed by the Agency for Healthcare Research and Quality (AHRQ), is a tested, evidence-based resource to help hospitals work as partners with patients and families to improve quality and safety. The Guide contains four strategies, each accompanied by an implementation handbook, and tools for patients, families, and clinicians.
Also related to: Patient and Family Preparation, Clinician and Leadership Preparation, and Organizational Partnership.
This module focuses on making sure patients and their family members understand what is happening during the patient's hospital stay, are active participants in the patient's care, and are prepared for discharge.
Also related to: Clinician and Leadership Preparation.
This toolkit contains materials for patient partners who will be engaged in redesigning care, as well as a packet for healthcare workers that will be working with patient partners. They are intended to serve as a starting point for customization by healthcare organizations who will be engaging patients in quality improvement or system redesign.
This Patient-Centered Care Improvement Guide is designed as a practical resource for organizations striving to become more patient-centered, yet perhaps struggling with how to do so. The resource includes a thorough introduction to patient-centered care, a self-assessment tool, and practical approaches for building a patient-centered culture.
Also related to: Patient and Family Preparation, Clinician and Leadership Preparation, and Organizational Partnership.
Organizational PartnershipThis report provides guidance to key constituents in healthcare—patients and families, providers, administration, educators, researchers, advocates, and funders—for advancing patient- and family-centered care, and specifically by creating partnerships with patients and families in quality improvement and healthcare redesign. Many of the report's recommendations are illustrated by examples drawn from health facilities and other organizations that are making exemplary progress in partnering with patients and families.
Also related to: Clinician and Leadership Preparation and Care and System Redesign.
The Patient and Family Advisors and Leaders Network (PFAC Network) is for anyone interested in the work of patient and family advisory councils and collaborative efforts in all healthcare settings. The discussions on this website cover topics related to promoting patient- and family-centered care in a hospital or medical center, ambulatory care clinic or office, long term care facility, and home care.
In the discussion paper Patients and Health Care Teams Forging Effective Partnerships, released December 17, 2014 by the Institute of Medicine (IOM), the authors from the IOM Roundtable on Value & Science-Driven Health Care’s Best Practices Innovation Collaborative elaborate on how patients view their own roles within the health care network and explain how to forge stronger partnerships with patients. The authors draw their insights from their deep experiences, from interviews with patients and clinicians, and from their analysis of published literature. They also outline key tenets for integrating patients into health care teams and coordinating care together.
This series of short case studies examine hospitals that have made long-term commitments to advance the practice of patient- and family-centered care.
Also related to: Clinician and Leadership Preparation and Care and System Redesign.
Measurement and ResearchThis white paper considers how patients and families can contribute to the research process through patient-powered registries and research networks. It outlines the considerations for patient advocacy and support organizations wishing to create or participate in these entities.
PatientsLikeMe is a patient-powered research network where people can connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care.
Also related to: Patient and Family Preparation.
This rubric specifically focuses on patient and family engagement in research to help illustrate promising practices emerging in this relatively new area. It is intended to provide guidance to applicants, merit reviewers, awardees, and engagement/program officers regarding patient and family engagement in the conduct of research.
These two resources contain selected sample engagement plans taken from actual projects funded by the Patient-Centered Outcomes Research Institute (PCORI). These two set of plans for patient and other stakeholder engagement in PCORI-funded projects serve as educational examples of how engagement in research can occur. The second set of plans specifically focuses on PCORI’s Improving Methods for Conducting Patient-Centered Outcomes Research portfolio.
PCORnet will be a large, highly representative, national network for conducting clinical effectiveness research that will provide needed evidence to help patients and their caregivers make better-informed decisions. PCORnet will bring together clinical data research networks (CDRNs), patient-powered research networks (PPRNs) and a coordinating center, which will provide technical and logistic support to establish a functional research network of health information. While the network is not expected to be functional until 2015, PCORnet.org currently offers resources and events for those interested in learning more and being involved.
Patient Reported Outcomes Measurement Information System (PROMIS) is a system of highly reliable, precise measures of patient-reported health status for physical, mental, and social well-being. PROMIS tools ask questions that measure what patients are able to do and how they feel. PROMIS measures can be used as primary or secondary endpoints in clinical studies of the effectiveness of treatment.
This webinar addresses how engagement can be practiced in research. It offers examples of successful practices of patient and stakeholder engagement in all stages of the research process, addresses major concerns and barriers to engaging patients and stakeholders in research, and informs the public on ways to get involved with the Patient-Centered Outcomes Research Institute (PCORI) and their work.
This toolkit is a comprehensive set of orientation materials (agenda, detailed manual for orientation facilitators, and 20 supplementary worksheets/exercises/forms) to be used for patient partners who will be serving on advisory boards or stakeholder groups for research projects.
Transparency and AccountabilityThis report develops a strategy for rapidly advancing patient and family engagement by leveraging new health information technologies. It is the synthesis of a research effort conducted by the National Committee for Quality Assurance and includes a series of recommendations for advancing opportunities to use health IT to support patient engagement and progress toward the Triple Aim of healthcare.
Also related to: Patient and Family Preparation.
This guide outlines approaches that can be adopted to make displays of quality information more useful to healthcare consumers, and thus, more relevant and more likely to be used. It briefly reviews challenges to displaying comparative information and then discusses ways to make it easier for consumers to understand, interpret, and use performance reports.
This resource provides guidelines for public reporting of cost and quality information in an effective, relevant, and consumer-friendly manner that promotes high-quality, affordable choices. These recommendations are the results of a series of interviews conducted by the American Institutes for Research (AIR) with consumers from a wide variety of backgrounds.
This document presents recommendations for improving public reporting websites based on lessons learned from usability testing conducted by the American Institutes for Research (AIR) with 8 community-based organizations. The report focuses on three particularly important sections of websites for engaging and supporting consumers in healthcare decision-making—including the home page, comparative reports of quality, and health information. Actionable recommendations are given using the 8 websites as examples.
OpenNotes is a national initiative working to give patients access to visit notes written by their doctors, nurses, and other clinicians. The goal is to enable patients to easily read notes written about their care and to bring more transparency to medical records.
Also related to: Patient and Family Preparation.
The Patient Engagement Framework is a model created to guide healthcare organizations in developing and strengthening their patient engagement strategies through the use of eHealth tools and resources.
This primer includes examples of how three different stakeholder audiences—payers, providers, and consumers –can benefit from the public reporting of cost and resource use information. It includes examples and case studies from each stakeholder audience to demonstrate the ways that public reporting of this information has been used for various purposes.
This brief describes the basics and importance of preference-sensitive care and shared decision-making and suggests action steps and key issues for employers and communities to consider. Emerging initiatives by health plans and employers are highlighted, showcasing different models of using shared decision-making to improve patient outcomes and, in some cases, achieve cost savings.
Also related to: Legislation and Regulation.
Legislation and RegulationThis article summarizes HIPAA "basics" and offers in-depth discussions of specific issues relating to the interface of HIPAA and the principles of patient- and family-centered care.
In 2008, Massachusetts enacted a law that requires all hospitals to create and maintain Patient and Family Advisory Councils (PFACs), which are groups of current and former patients and family members who collaborate with hospital staff to improve the care experience. In 2012, Health Care for All set out to evaluate the 2011 PFAC reports in regards to organization, leadership, training and orientation of members, impact of PFAC on specific quality improvement initiatives, and extent to which quality improvement initiatives in which the PFAC members participated relate to national or state healthcare system reform priorities.
Partnership in Public PolicyThis report describes a five-arm controlled trial examining the effectiveness of public deliberation and comparing alternative approaches. The most comprehensive evaluation of deliberative methods to date, it provides insights regarding the public's views of the use of research evidence in healthcare decision-making.
This set of knowledge briefs describe public deliberation—a distinct consultation method used to obtain considered and informed public input on complex societal issues. The first brief focuses on public deliberation on health topics and the second centers on methods and measures of public deliberation.