1. Patient and Family Engaged Care
An NAM Initiative
and Guiding Framework
Winter 2017
Presented by:
Tara Montgomery
Principal, Civic Health Partners;
Member, NAM Care Culture & Decision-Making
Innovation Collaborative
Introduce self; disclaimer that I am not an author of the framework and not a formal spokesperson but as a member of the collaborative, have been facilitating communications strategies. I am sharing this with you today (patient safety activists) because there is evidence for the connection between PFEC and patient safety and outcomes, and because as as a consumer healthcare advocate, I want to share the state of the art in thinking with you empower you to adopt strategic approaches to influence change in healthcare organizations, hospitals, and other care settings.

2. The National Academy of Sciences Established in 1863
“The Academy shall, whenever called upon by any department of the government, investigate, examine… and report upon any subject of science or art…”
I wanted to start by giving you a little context on the National Academy of Medicine and the role we play.
Our umbrella organization, the National Academy of Sciences was established in 1863 by an Act of Congress, which was signed by President Abraham Lincoln, as a private, nongovernmental institution to provide independent, unbiased advice the nation on issues related to science and technology.
The Academies have Members, and members are elected by their peers for outstanding contributions to the field, in particular in research, and act as volunteers in their work with us.
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3. National Academy of Medicine Established in 1970 as the Institute of Medicine (IOM)
1970: The Institute of Medicine (IOM) was founded to advise & improve the health of people everywhere.
The New York Times describes the IOM as “the most esteemed and authoritative adviser on issues of health and medicine, and its reports can transform medical thinking around the world.”
In 1970, the Institute of Medicine (IOM) was founded within the National Academies of Sciences to advise the nation on healthcare issues & to improve the health of people everywhere. It achieved this by convening preeminent experts in the field to produce what we call “consensus reports.” These reports involve convening the experts, reviewing all the literature on a topic, and publishing the scientific consensus on policy recommendations for a given area.
To give you a sense of our reputation in the field, The New York Times described the IOM as “the most esteemed and authoritative adviser on issues of health and medicine, and its reports can transform medical thinking around the world.”
In 2015, we had a reorganization and became known as the National Academy of Medicine, or NAM, which aims to improve health for all by advancing knowledge and accelerating progress in science, medicine, policy, and health equity.
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4. Building on the IOM
You can see here some of the important and influential consensus reports developed by the IOM. Some of them you may have heard of, such as Crossing the Quality Chasm, which was released in 2001 and is well known for including patient-centeredness as a crucial component of a high quality healthcare system. After the reorganization, the consensus reports are now branded as products of the National Academies of Sciences, Engineering and Medicine going forward.
The NAM now works more broadly through both domestic and global initiatives to build on the work of the IOM, and address critical and emerging issues in health, medicine, and related policy and inspire positive action across the field. The NAM collaborates closely with its peer academies and other divisions within the National Academies of Sciences, Engineering, and Medicine, in particular the Health and Medicine Division who continue to produce consensus reports.

5. Value & system performance Science & technology
Working through collaborative action to reduce barriers and facilitate progress
Value & system performance
Value Incentives and Systems Innovation Collaborative
Science & technology
Clinical Effectiveness Research Innovation Collaborative
Digital Learning Collaborative
Culture & clinical decision-making
Care Culture & Decision-making Innovation Collaborative (CCDmIC)
Cross-cutting initiatives
Executive Leadership Network
Patient & Family Leadership Network
The Leadership Consortium works through the activities of its member organizations, as well as through four Innovation Collaboratives and two leadership networks. Each innovation collaborative is devoted to developing collaborative projects to drive progress on the areas we see as most important for advancing science and value in health and health care.
Value Incentives and Systems;
Clinical Effectiveness Research;
Digital Learning, and;
Care Culture and Decision-Making.
You’ll also see our 2 leadership networks: the Patient and Family Leadership Network and the Executive Leadership Network, which I will talk more about a little later.
The work we’re presenting today emanated out of the Care Culture and Decision-making Innovation Collaborative – or CCDmIC – and involved members of the Patient & Family Leadership Network.
The CCDmIC brings together patients, families, clinicians, and technology and communications professionals to promote patient- and family-centered care, including team-based health care and shared decision-making. It is co-chaired by Mary Naylor who is the Director of NewCourtland Center for Transitions and Health at the University of Pennsylvania and Bill Novelli, who is the former CEO of AARP, and is now a Professor at Georgetown University and a Co-chair of the Coalition to Transform Advanced Care, or C-TAC.
The goal of the CCDmIC is to spur joint activities to drive health care culture in three main areas:
Culture: in other words, to ensure that the next generation of clinicians provides care that reflects patients’ preferences and values, care teams work collaboratively and in concert with patients, and health care leadership fosters creation of a culture of care that is seamless and team-driven, where patients and families are integral members of the care team.
The 2nd area is Evidence: The ability to make informed decisions requires timely delivery of scientific evidence to patients and families in a format that best meets their needs.
And the 3rd area of focus is Engagement: As awareness and opportunity has grown for patients and families to be more engaged in their own care, as well as in the design and delivery of care at the organizational and policy levels, it is critical to engage all health care stakeholders to guide the transformation to a patient and family engaged care culture within systems that continuously learn. Central to this activity is the ability of patients and families to play as active a role in health care decision-making as they desire, at all levels.
@theNAMedicine

6. The Evolution to Patient and Family Engaged Care
2001: Patient centered care is providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.*
2017: Patient and family engaged care (PFEC) is care planned, delivered, managed, and continuously improved in active partnership with patients and their families (or care partners as defined by the patient) to ensure integration of their health and health care goals, preferences, and values. It includes explicit and partnered determination of goals and care options, and it requires ongoing assessment of the care match with patient goals.** 
This slide is really a shorthand of how the field has progressed over many years.
As I mentioned earlier, the Crossing the Quality Chasm report in 2001 defined patient and family-centered care as “care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions”
This definition was seminal in raising the profile of patient centeredness as a central attribute of high quality healthcare.
Over the years, extraordinary work has been done to realize patient and family centered care, and in order to do so, patients and families have increasingly engaged on healthcare improvement work.
*Institute of Medicine, Crossing the Quality Chasm, 2001
**National Academy of Medicine, Harnessing Evidence and Experience to Change Culture, 2017
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7. Scientific Advisory Panel on the Evidence Base for Patient and Family Engaged Care
Goals
Develop a common understanding of essential elements for creating and sustaining patient and family engaged culture
Gather, assess and disseminate the evidence for the tools and strategies to advance patient and family engaged care culture
Identify research/researchers who can contribute to the evidence base
Identify the key gaps in the evidence-base for PFEC, and consider the approaches and priorities for addressing them
Offer insights to guide culture change strategies of NAM, CCDmIC, and for application in the Patient & Family Leadership Network
The work we’re here to discuss today began first as a convening, or bringing together key experts in the field.
Over the years, the CCDmIC discussions highlighted great interest in the field for gathering and synthesizing the evidence base for patient and family centered care and patient and family engagement.
So in response, the NAM convened a Scientific Advisory Panel of 25 experts to:
identify elements and factors that consistently emerge as essential to creating and maintaining a culture of patient and family engaged care;
organize those tools, strategies, and cultural elements into an easy-to-follow framework;
compile evidence in support of the framework; and
identify gaps and opportunities to guide culture change strategies.
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8. Patient and family engaged care (PFEC) has been identified as a cornerstone of the national strategy for delivering better care and achieving better patient experiences at lower costs. How can we make PFEC a “must have” to achieve high-quality, safe, and efficient care? Crucial to making PFEC the norm in health care is understanding that all stakeholder groups are part of the solution.

9. This is a broad overview of the framework
This is a broad overview of the framework. The group approached the task by looking at the *outcomes* sought by patient and family engaged care, and then moving* backward* through the transformational stages to understand the related *practice* outputs needed, the *strategic* inputs to yield those elements, and the *organizational foundations* to craft the strategies.
Comprehensiveness of the Framework
Quadruple Aim outcomes
Culture Shift
Flexible – start where the organization is
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10. From high level Broad overview of the framework:
core elements of each transformational stage
Delineation of core elements of each transformational stage
In this high-level view, the core elements of each transformational stage for patient and family engaged care are presented: the *engagement* outcomes of better culture, better care, better health, and lower costs; the *practice* outputs of better engagement, better decisions, better processes, and better experience; the *strategic* inputs of structures, skill and awareness building, connections, and practices; and the *organizational* foundations of leadership and levers for change.
We don’t “arrive” at Person Family Engaged Care – it is a continuous improvement journey
Quadruple Aim better culture including joy in work
Pivotal role of active leadership support – not enough to say they are committed, but are the Levers for change available to staff: authentic self assessment for instance, resources dedicated to implementation
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11. To a more detailed implementation plan
Here is a robust depiction of the framework with many of the key elements identified.
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12. NAM Perspectives discussion paper
A subset of members of the Scientific Advisory Panel then took on the charge to present the framework and associated evidence. The paper was published January 31, 2017 as an NAM Perspectives discussion paper.
Deeper dive into the logic and evolution of the framework with more connections to the healthcare environment.
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13. How to contribute to this work
Give us feedback on the framework
Provide ideas for how the Guiding Framework can be most effectively implemented
Ideas for collateral materials and/or messages to encourage implementation of the Guiding Framework among:
patient and family leaders
health system executives
clinicians
other key healthcare stakeholders
Engage on other collaborative activities
Patient & Family Leadership Network
Executive Leadership
Update to Resource Compendium for Patient & Family Healthcare Leadership
So, in terms of how this audience can help us build on this work:
[READ BULLETS ON SLIDE]
In addition, it would be very helpful to us if you could provide us some feedback, for example:
In your experience, what are the most compelling messages to these audiences?
What are ways for best communicating to patient & family audiences?
@theNAMedicine

14. Patient & family advisor roles
Members, chairs, or co-chairs of a Patient and Family Partnership Council
Members of rapid improvement teams testing change ideas
Full members of committees focused on:
safety and quality improvement
facility design
planning, implementing, and evaluating new policies, practices, and programs
Members of groups creating, implementing, evaluating health information resources and education programs for patients and families
Educators for employee orientation, continuing education for senior leaders, front-line staff and clinicians, and education for students/trainees
Partners with researchers in designing, conducting, and disseminating studies that answer questions and evaluate outcomes that matter most to them
Members of root cause analysis teams
Appointed member(s) of the system’s governing body or bodies
These are the roles for patient and family advisors at the health system level, as presented in the paper.
Evolution of the Advisor role in organizations. Preparation of Advisors is critical to successful partnership.
@theNAMedicine

15. NAM Patient & Family Leadership Network
Engage with NAM
NAM Patient & Family Leadership Network
A virtual Network that engages the nation’s patient and family thought leaders to achieve better culture, better care, better value, and better health for all in a healthcare system that continuously learns and improves.
Website: nam.edu/PFLN
In addition, we’d like you to work with us!
One way to do so is by joining the The Patient and Family Leadership Network, which is a virtual Network that engages patient and family thought leaders as advisors to the NAM and others to achieve better culture, better care, better value, and better health for all.
In the past, the Network was focused on involving leaders of hospital patient and family advisory councils. But over time and a lot of discussion with patient and family leaders, we have expanded the breadth of the network to include patient and family thought leaders throughout the continuum of health care – from the individual and hospital level up through state and federal policy.
We are actively expanding the Network and encourage you to sign up by visiting the website at nam.edu/pfln
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16. Questions? @theNAMedicine
To prompt questions from the group you can ask the following:
What are ways for best communicating to key audiences:
Patients and families
Clinicians
Health system leaders
Others?
In your experience, what are the most compelling messages to these audiences?
@theNAMedicine

17. Thank You! Tara Montgomery Principal, Civic Health Partners
@TaraCivicHealth
@theNAMedicine