Resources

Initiatives and Projects

Always Events®

Shouldn’t patients be able to trust their care? While provided care, consistency is necessary component of increasing patient trust. Always Events® are those aspects of the patient experience that are so important to patients and families that health care providers must aim to perform them consistently and reliably for every patient, every time. This framework provides a strategy to help health care providers identify, develop, and achieve reliability in person- and family-centered care delivery processes. Considering advisors know first hand the pivotal aspects of the patient experience, who better than to utilize this resource to recommend solutions for increased consistency and reliability? Utilize this resource within you advisory council identify specific events within your organization to improve the delivery of care.

The Conversation Project

The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. It’s time to transform our culture so we shift from not talking about dying to talking about it. It’s time to share the way we want to live at the end of our lives and communicate the kind of care we do or do not want for ourselves. It’s not easy to talk about how you want the end of your life to be. We can make sure that our own wishes and those of our loved ones are expressed and respected. The Conversation Project connects to provide communities with the resources and support to start a program locally.  Would your Advisory Council or group be interested in starting a Conversation Project at your healthcare organization to improve end of life care?

Partnership for Patients

The Partnership for Patients initiative is a public-private partnership working to improve the quality, safety and affordability of health care for all Americans. Physicians, nurses, hospitals, employers, patients and their advocates, and the federal and State governments have joined together to form the Partnership for Patients. The Partnership for Patients aims to engage 100 percent of the nation’s acute care medical centers participating in making hospital care safer, more reliable, and less costly through the achievement producing safer care and improving care transitions. Partnership for Patients achieves these goals through Hospital Innovation Improvement Networks (HIIN) which hospitals join to access a learning community to improve the safety of care. Is your hospital participating? Find out by asking the Director of Safety or Quality at your hospital.

 

Patient and Family Advisor Resources

Flesch-Kincaid – Literacy Score Instructions

The “average” American reads at a 7^th or 8^th grade level and healthcare professionals often do not realize that patients are unable to understand educational materials. The Flesch-Kincaid is a test rates text on a U.S. school grade level. For most documents, aim for a score of around 6.0 to 7.0 which translates to a 6^th or 7^th grade reading level. Utilize this test when you are reviewing any documents that patients or their families will be receiving.

PFA Resume Template

Often when Patient Family Advisors are invited to share their stories and contribute to educational events, we are asked for a bio and/or resume. We receive this request to keep our partnering healthcare providers engaged by offering Continuing Education Units (CEUs). Each clinical healthcare provider is required to collect a number of hours so that his or her license remains current. To meet the requirements for providing CEUs to participants, the organizing group must submit resumes and CVs for everyone who presents. PFCC Partners has developed this template to help guide Patient Family Advisors in providing their relevant experience.

Patient Education and Health Literacy

• AHRQ Health Literacy Universal Precautions Toolkit
• American College of Physicians (ACP) Patient Education Resources
• The Health Literacy and Plain Language Resource Guide
• Health Literacy Tips by Jennifer Pearce
• Self-Assessment for Cultural Competence
• 10 Questions You Should Ask Your Doctor

Selected Publications

Articles

• Achieving an Exceptional Patient and Family Experience of Inpatient Hospital Care Adding Value by Talking More
• Effectiveness of Strategies for Informing, Educating and Involving Patients
• Hospitals Increasingly Turn To Patients For Advice
• Individual and Family Engagement in the Medicaid Population: Emerging Best Practices and Recommendations
• Making High-Quality Patient-Centered Care a Reality
• Making Patient-Centered Care Reliable
• Patient-Centered Care: What Does it Take?
• Patient and Family Engaged Care—Going Beyond Tactical Buzzwords
• Shared Decision Making- The Pinnacle of Patient-Centered Care
• The Importance of Being
• Transforming Care Teams to Provide the Best Possible Patient-Centered, Collaborative Care

 

Books

• Crossing the Quality Chasm: A New Health System for the 21st Century
• Patient Engagement: Catalyzing Improvement and Innovation in Healthcare
• Transforming Health Care Scheduling and Access

 

Reports

• Improving Pediatric Safety and Quality with Healthcare Information Technology (Massachusetts)
• Partnering With Patients, Institute of Medicine
• Patient Partnerships and Outcomes Brief Literature Review
• Strengthening the Role of Patient & Family Leaders in Healthcare Improvement

Toolkits and Guides

• AIR Roadmap to Patient Family Engagement in Healthcare
• Engagement Behavior Framework
• Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care
• New Rules for Radical Redesign in Health Care
• Patient Family Health Care Leaders Resource Compendium–
• Patient and Family Engagement Guidelines Pediatric Patients in Adult Hospitals
• Safety Across the Board Guide
• Should Money Come Into It? – A Tool for Deciding Whether to Pay Patient-Engagement Participants
• Stewarding Regional Health Transformation – A Guide for Changemakers
• PFCC Partners Workplan Template

 

Videos

• Domestic Lean Goddess Series
• Health Affairs Patient Engagement Video Series
• Healthcare QI Models
• Patients and Families Authentically Partnering in Research (PCORI)

 

Organizations

 

 

Description of Organizations

Agency for Healthcare Research and Quality

The Agency for Healthcare Research and Quality’s (AHRQ) mission is to produce evidence to make health care safer, higher quality, more accessible, equitable, and affordable, and to work within the U.S. Department of Health and Human Services and with other partners to make sure that the evidence is understood and used.

American Hospital Association

The American Hospital Association (AHA) is the national organization that represents and serves all types of hospitals, health care networks, and their patients and communities. Its mission is to advance the health of individuals and communities by leading, representing, and serving hospitals, health systems and other related organizations that are accountable to the community and committed to health improvement.

Citizens for Patient Safety

Citizens for Patient Safety (CPS) was founded in 2005 by Patricia Skolnik after she and her husband, David, lost their only child to medical error and poor communication. CPS’ mission is to increase engagement between patients/families and providers for better healthcare outcomes. CPS is committed to contributing to the achievement of the triple aim and our work is in alignment with National Quality Strategies and Goals. CPS provides curriculum, training and coaching designed to improve health literacy, strengthen person and family engagement as partners in their care and promote effective communication and coordination of care through shared decision-making.

Family Resource Center Network of Los Angeles County

Early Start Family Resource Centers, staffed by families of children with special needs, are California’s Part C of the Individuals with Disabilities Education Act (IDEA) program. Part C provides early intervention service systems for infants and toddlers with or at risk for disabilities, and their families. Overall, the Family Resource Center Networks, mission is to promote, expand and share available resources with families that have children with special health care needs and/or other disabilities in Los Angeles County.

Family Voices

Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Family Voices builds the capacity of parent-run centers throughout the country via the many state affiliate programs that provide families with the information and supports they need to make informed decisions about the health care of their children. They provide information and a forum for parent centers and families to advocate for improved public and private policies, builds partnerships among professionals and families, and serves as a vital resource on health care.

Institute for Healthcare Improvement

Working to improve health and healthcare worldwide, The Institute for Healthcare Improvement (IHI) takes a unique approach to working with health systems, countries, and other organizations on improving quality, safety, and value in healthcare. This science of improvement is an applied science that emphasizes innovation, rapid-cycle testing in the field, and spread in order to generate learning about what changes, in which contexts, produce improvements. It is characterized by the combination of expert subject knowledge with improvement methods and tools. It is multidisciplinary — drawing on clinical science, systems theory, psychology, statistics, and other fields. The National Patient Safety Foundation (NPSF) Call to Action of IHI relies on strong partnerships with healthcare leaders and policymakers we have the opportunity to improve patient safety and ensure that patients and those who care for them are free from preventable harm.

Institute for Patient-and Family-Centered Care

The Institute for Patient- and Family-Centered Care (IPFCC), a non-profit organization founded in 1992, takes pride in providing essential leadership to advance the understanding and practice of patient- and family-centered care. By promoting collaborative, empowering relationships among patients, families, and healthcare professionals, IPFCC facilitates patient- and family-centered change in all settings where individuals and families receive care and support. IPFCC also serves as a central resource for policymakers, administrators, program planners, direct service providers, educators of health care professionals, researchers, design professionals, and patient and family leaders.

Patient-Centered Primary Care Collaborative

The Patient-Centered Primary Care Collaborative (PCPCC) is a not-for-profit multi-stakeholder membership organization dedicated to advancing an effective and efficient health system built on a strong foundation of primary care and the patient-centered medical home. Representing a broad group of public and private organizations, the PCPCC’s mission is to unify and engage diverse stakeholders in promoting policies and sharing best practices that support growth of high-performing primary care and achieve the “Quadruple Aim”: better care, better health, lower costs, and greater joy for clinicians and staff in delivery of care.

Planetree

Planetree, Inc. is a mission-based not-for-profit organization that partners with healthcare organizations around the world and across the care continuum to transform how care is delivered. Powered by over 50,000 focus groups with patients, families, and staff, and over 35 years of experience working with healthcare organizations, Planetree is uniquely positioned to represent the patient voice and advance how professional caregivers engage with patients and families. Guided by a foundation in 10 components of patient centered care, Planetree informs policy at a national level, aligns strategies at a system level, guides implementation of care delivery practices at an organizational level, and facilitates compassionate human interactions at a deeply personal level.

Patients’ View Institute

A 501(c)(3) non-profit organization and member of the National Quality Forum, The Patients’ View Institute (PVI) is committed to organizing and amplifying the patient voice to have a profound impact on the quality of care. PVI strives to derive meaning from patient stories in efforts to connect heart and mind to the importance of patient care. Utilize this source to help drive the message home to your staff or organization.

Medically Induced Trauma Support Services

Medically Induced Trauma Support Services (MITSS), Inc. is a non-profit organization founded “To Support Healing and Restore Hope” to patients, families, and clinicians who have been affected by an adverse medical event. Medically induced trauma is an unexpected outcome that occurs during medical and/or surgical care that affects the emotional well being of the patient, family member, or clinician. MITSS achieves its mission by creating awareness and education, providing direct support services to patients, families, and clinicians, and advocating for action.

The Disparities Solution Center

The Disparities Solution Center (DSC) is dedicated to the development and implementation of strategies that advance policy and practice to improve quality, eliminate racial and ethnic disparities, and achieve equity in health care in a time of rapid transformation. Through developing and disseminating models for improving quality and identifying and addressing racial and ethnic disparities in health care nationally, regionally, and locally, DSP hopes to move beyond research to action.

OpenNotes

OpenNotes is the international movement dedicated to making healthcare more open and transparent by urging doctors, nurses, therapists, and others to share their visit notes with patients. Are you and your peers of the 18+ million patients who have online access to their visit notes? If not, OpenNotes is a great resource to you and your advisory council. The ultimate goal is to change the way visit notes are managed. By providing visit notes to patients and families, they are empowered to feel more in control of their healthcare decisions and improve the quality and safety of healthcare.

 California Hospital Compare

Cal Hospital Compare features information on California hospitals that helps consumers make smarter and more informed choices when making medical decisions. Publicly available information about hospital quality — and consumers eager to consider quality in their medical decisions — will improve the health care system. Cal Hospital Compare is a performance reporting initiative managed by a multi-stakeholder Board of Directors, with representatives from hospitals, purchasers, health plans, and consumer groups. Prior to 2016, Cal Hospital Compare was known as the California Hospital Assessment Task Force (CHART). CHART was first established in 2004 for the purposes of developing a statewide hospital performance reporting system using a multi-stakeholder collaborative process. CHART aggregated data from participating hospitals until 2011, when its Board of Directors moved to using only publicly available data sources for all hospitals, not just those participating voluntarily. CHART, and now Cal Hospital Compare, are supported by a generous grant from the California Healthcare Foundation (CHCF).