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100 Million Healthier Lives Engaging People with Lived Experience Tools

This collection of resources, developed as part of the 100 Million Healthier Lives initiative, provides key information and tools to support communities and organizations to authentically engage people with lived experience in co-design and implementation efforts.

Patient Experience Data Self-Assessment

The Patient Experience Data Self-Assessment Tool and corresponding Answer Key challenges knowledge and common assumptions about what the data actually means. The tool can be used to expand your current knowledge on using patient experience data effective.

Patient Care Experience Observation Exercise

The purpose of this exercise is to learn about and understand the experience of care in your organization from the patient and family perspective, using observations of care processes to inform improvements to the care experience. The exercise may be used in any care setting.

Always Events Toolkit

Always Events are aspects of the patient experience that are so important to patients and families that health care providers must perform them consistently for every patient, every time. The toolkit supports providers in partnering with patients and family members to co-design, reliably implement, and sustain and spread Always Events to dramatically improve the care experience.

Transplant Guardian Angel Always Event

The Transplant Guardian Angel program was developed to ensure that patients and families are supported through the transplant surgical process by providing them with accurate, real-time updates and clinical information, thereby reducing anxiety and increasing effective communication between care delivery teams.

MyStory Always Event

MyStory is an interprofessional effort designed to personalize the care provided to pediatric patients and transform the hospital experience for the patients and families by capturing each pediatric patient’s “story” and use the story to personalize the care provided and involve them in care planning and decision making.

"Same Page" Transitional Care Resources for Patients and Care Partners

These resources and tools were 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 health care providers to all be “on the same page” in understanding the patient’s health and health care needs when the patient is transitioning from one setting of care to another.

Always Use Teach Back!

The Always Use Teach Back! tools can be used to confirm patient understanding of care instructions by asking patients to repeat the instructions using their own words.

PAIR Parent Mentor Program

PAIR — Parents Assisting Inspiring Reassuring — is a program created to help parents of children with cancer connect with other parents, who serve as mentors. The team at St. Jude’s developed a number of tools, including a detailed presentation about the program and tools for recruiting and onboarding mentors, matching mentors with mentees, and training mentors.

ISHAPED Patient-Centered Approach to Nurse Shift Change Bedside Report

ISHAPED (I=Introduce, S=Story, H=History, A=Assessment, P=Plan, E=Error Prevention, and D=Dialogue) focuses on making bedside shift reports more patient- and family- centered. The goal is to always include patients in the ISHAPED nursing shift-to-shift handoff process at the bedside to add an additional layer of safety by enabling the patient to communicate potential safety concerns.

SMART Discharge Protocol

The SMART Discharge Protocol (Signs, Medications, Appointments, Results, and Talk with me) was developed to improve care for patients and families and to improve the discharge process. The tools include the SMART Discharge Checklist for patients and families, FAQs for health care staff and clinicians about implementing the SMART Discharge Protocol, a presentation, and a self-learning packet.

Always Events Blueprint for Action and Always Events Healthcare Solutions Book

These tools guide organizations in creating a more person- and family-centered culture through the development and implementation of Always Events, defined as aspects of the patient experience that are so important to patients and families that health care providers should always get them right.

Integrated Care Pathway for Total Joint Arthroplasty

This Care Pathway provides recommended ideas to improve care for patients receiving total joint arthroplasty (TJA) and includes safe, effective, efficient, and patient-centered TJA care processes. The Pathway is designed for use by all members of the orthopaedic community who are responsible for the TJA process, including those at surgical practices, hospitals, and other care settings.

Perinatal Ticket to Discharge

This communication tool is given to patients by maternity center staff to help guide educational discussions and to provide a "to do" list of items that need to be completed prior to discharge from the hospital.

Toolkit: Getting Started in Video Ethnography — A Catalyst for Guiding and Motivating Quality Improvement

This toolkit contains instructions, examples, resources, and tools for combining ethnographic techniques of interview and observation with video recording to more fully understand patients' experiences in health care, an essential step in providing patient-centered care.

How-to Guide: Improved Care for Patients with Congestive Heart Failure — Rural Hospitals Supplement

The goal of this How-to Guide, which has been tailored specifically for rural hospitals, is to significantly improve care and reduce readmissions for patients with congestive heart failure by reliably implementing the recommneded components of care.

How-to Guide: Improved Care for Patients with Congestive Heart Failure

The goal of this How-to Guide is to significantly improve care and reduce readmissions for patients with congestive heart failure by reliably implementing the recommended components of care.

Script to Orient Patients and Families to Family Activated Safety Team (FAST)

Hospital staff can use this script to orient patients and families to the Family Activated Safety Team (FAST), a hotline to obtain extra help when concerns about care arise.

Hospital Self-Assessment Inventory for Patient- and Family-Centered Care

This assessment tool allows hospital leaders to gauge the readiness of their organization to provide patient- and family-centered care.

Patient Self-Management Tools: An Overview

From the California HealthCare Foundation, this paper describes technologies used by consumers to manage their health.

Self-Monitoring Symptom Log

This tool helps patients track how changes in diet, medications, activity, emotions, or other factors are affecting their symptoms and can be used as a communication tool with health care providers.

Helping Patients Manage Their Chronic Conditions

Helping Patients Manage Their Chronic Conditions, a report for the California HealthCare Foundation, may be the clearest and most accessible document on self-management support to date.

Patient- and Family-Centered Care Organizational Self-Assessment Tool

Use this self-assessment tool to assess how your organization is performing in relation to specific components of patient- and family-centered care, or as a basis for conversations about patient centeredness in the organization.

Assuring Healthcare Quality: A Healthcare Equity Blueprint

The Blueprint offers strategies and practices that hospitals can tailor and implement to address racial and ethnic disparities in providing quality care.

Patient-Centered Care Improvement Guide

This Guide is a practical resource for health care organizations that are striving to become more patient-centered and contains best practices and practical implementation tools.