Patient & Family Engagement: a Framework Patient & Family Engagement Planning Committee November 4, 2015 Marie Dotseth Catherine Schramm Kathy Welte

Welcome and Introductions!

MAPS Background and Focus on Patient and Family Engagement (PFE) MAPS Vision: “Safe Care Everywhere” MAPS Mission: “Engage a stakeholder coalition to achieve Safe Care Everywhere” MAPS Strategic Area of Focus: “Engaging Patients, Providers and the Community for Better, Safer Care Across the Continuum” Convene and help align community – engagement for safety Focus on the Patient and the process of health care, including transitions Strengthen relationships between patient and their care teams

Why MAPS for Advancing PFE? Broad perspective and representation Neutrality & independence from any one provider organization, public agency or consumer group – collaborative approach Ability to have a 100K foot view Look at multiple levels of engagement – Direct care, organizational design, policy Focus on factors influencing engagement: Patient – beliefs, literacy, education Organization – policies, best practices, culture Society – social norms, expectations, regulations, policy

MAPS Completed, Current, and Future Work Related to PFE Completed “You: your own best medicine” Campaign Completed in 2014 Focus was directed at an individual care level (building patient/resident knowledge; individual interactions with care providers) Current grant-inspired work Starting in 2015 Focus likely directed at an organizational level (councils, committees, care process and delivery design decisions for safety and quality) Future, broader work Continue building on individual and organizational initiatives to influence bigger advocacy and societal issues across care settings for engagement

Engagement as a pathway to: Triple Aim Better quality of care Increase cost efficiency Improve population health “Patient engagement is the blockbuster drug of the century” Forbes.com internet blog 2012 “the holy grail of the healthcare system” MedPage Today blog by KevinMD.com 2012

PFE Planning Committee Welcome! PFE Planning Committee to initiate grant-inspired work and formation of tool(kit) deliverables to advance PFE work within organizations across the state and across care settings Today’s next steps: Review the grant contract Review and discuss possible framework (from Health Affairs) to guide approach and work going forward

Grant-inspired long-term work and objectives Synthesize existing tools and best practices across settings of care Develop simplified tool(kit) for providers Include a organizational gap analysis Include legal guidance Develop patient and family guidance Host community-wide educational event(s) Begin convening planning, advisory, resource committees

Grant Proposal Specifics (see handout) MAPS will synthesize existing tools and research on best practices for patient and family engagement in different settings of care in to develop simplified, standardized guidance for providers and patients when implementing engagement best practices in different care settings. MAPS will convene the community to establish a shared baseline of understanding about patient and family engagement and to align around a set of priorities and expectations for patient and family engagement in MN, and Establish a first of its kind “Patient Family Advisory Council across settings of care.”

Framework for Patient and Family Engagement Needed to provide a standardized way to look at definitions and how it works Forms engagement can take Levels engagement can occur across the health care system Factors that influence engagement Implications for development of interventions and policies to support engagement Research agenda

Adopting a framework for MAPS’s Approach Patient and Family Engagement: A Framework for Understanding the Elements and Developing Interventions and Policies Authors: Kristin L. Carman, Pam Dardess, Maureen Maurer, Shoshanna Sofaer, Karen Adams, Christine Bechtel, and Jennifer Sweeney Published in Health Affairs 32, No. 2 (2013): 223-231 Several authors from the American Institutes for Research

Multidimensional Framework Organizational Level Model construct Levels of engagement Direct care Organizational design and governance Policy making Continuum of engagement Consultation Involvement Partnership and shared leadership Partnership & shared leadership Consultation Involvement Organizational design and governance Organization surveys patient re: care experiences Hospital involves patients as advisers or advisory council members Patient’s co-lead hospital safety & quality improvement committees

A Multidimensional Framework for Patient & Family Engagement in Health and Health Care Continuum of engagement Levels of Engagement Consultation Involvement Partnership & shared leadership Direct Care Patients receive information about a diagnosis Patients are asked about their preferences in treatment plan Treatment decisions are made based on patients’ preferences, medical evidence and clinical judgment Organizational design & governance Organization surveys patients about their care experiences Hospital involves patients as advisors or advisory council members Patients co-lead hospital safety and quality improvement committees Policy making Public agency conducts focus groups with patients to ask opinions about a health care issue Patients’ recommendations about research are used by public agency to make funding decisions Patients have equal representation on agency committee that makes decisions about how to allocate resources to health programs Factors influencing engagement: Patient (beliefs about patient role, health literacy, education) Organization (policies and practices, culture) Society (social norms, regulations, policy) Carmen K L et al. Health Aff 2013;32:223-231 Copyright by Project HOPE – The People-to-People Health Foundation, Inc.

Factors influencing engagement Patient: individual factors Knowledge, attitudes, beliefs E.g. experience with healthcare system Implications for vulnerable populations Organization: all types Encourage by demonstrating patient participation and leadership are welcome Organizational policies-how open is the organization Bedside rounding, shift reports at bedside, open visitor policy, EHR access Society: norms, regulations, policies Create mechanisms encouraging real input

Implications for developing interventions to promote engagement Continuum of engagement-extent to which patients are involved in decision making Possibility that a greater impact from implementing interventions across multiple levels of engagement Design interventions addressing factors that influence patient engagement

Research agenda What factors or combination of factors are most important? What supports are needed at organizational level to increase effectiveness at direct care level? What are most effective methods for organizations and policy makers to create opportunities for patient engagement? How to translate research finding into routine practice? How to effectively track and monitor progress?

Discussion: does this model make sense for our current grant deliverables and broader PFE work?

Next Meeting Draft Objectives Review again grant proposal deliverables Begin to review published literature related to existing tool(kits) Review to be provided Discuss and provide direction on how MAPS may contribute, either through simplification or existing resources, or creation of novel tool(kits), or both Understand, acknowledge and discuss gaps for various settings of care