Patient- and Family-Centered Care for Adults with Chronic Conditions

Patient- and Family-Centered Care for Adults with Chronic Conditions

Event Date: 
Tuesday, May 20, 2014

On May 20, 2014, the Innovations Exchange held a Web event titled Patient- and Family-Centered Care for Adults With Chronic Conditions.

This was the first Web event in a series designed to describe patient- and family-centered care, share novel experiences, and explore lessons learned.



Judi Consalvo, Program Analyst, Center for Outcomes and Evidence, Agency for Healthcare Research and Quality



Beverley H. Johnson, President and Chief Executive Officer, Institute for Patient- and Family-Centered Care

Ms. Johnson has provided technical assistance and consultation for advancing the practice of patient- and family-centered care to over 250 hospitals, health systems, federal, state, and provincial agencies, military treatment facilities, and community organizations. She assists hospitals and ambulatory programs with changing organizational culture, and facilitates visioning retreats and the integration of patient- and family-centered care concepts in policies, programs, and practices, as well as in facility design and the education of health care professionals. Ms. Johnson, who is invited to speak worldwide, has co-authored numerous books and publications on patient- and family-centered practice in pediatrics, newborn intensive care, maternity care, emergency care, geriatrics, and other aspects of adult health care. She has served as executive producer for award winning documentary films and videos and is the recipient of numerous awards.


Bernard RobersonBernard Roberson, MSM, BA, HSC, Administrative Director, Division of Patient- and Family-Centered Care, Georgia Regents Medical Center

Mr. Roberson, Administrative Director for the Division of Patient- and Family-Centered Care, joined Georgia Regents Medical Center in 2000. Previously, he served as the Director of Community Development at the United Way of Aiken County, South Carolina. Mr. Roberson earned a BA in Psychology at Augusta College and an MS in Management/Hospital Administration at Troy State University. He holds a Human Services Certificate from the University of Georgia’s Fanning Leadership Center and a Certificate in Public Housing Management from the National Association of Housing and Redevelopment Organization. He completed the AHRQ’s TeamSTEPPS Master Trainer Preparation Course and the United Way of America’s Train-the-Trainer Course for Outcomes Measurement.

Related Innovation Profile:

Patient Advisers Participate in Hospital Councils, Committees, Staff Training, and Other Activities, Contributing to Improved Patient Satisfaction and Better Organizational Performance

Additional Information

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Patient- and Family-Centered Care for Adults with Chronic Conditions
Web Event May 20, 2014 Follow this event on Twitter Hashtag: #AHRQIX

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Using the Webcast Console and Submitting Questions
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Accessing Presentations
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What is the Health Care Innovations Exchange?

  • Publicly accessible, searchable database of health policy and service delivery innovations
  • Searchable QualityTools
  • Successes and attempts
  • Innovators' stories and lessons learned
  • Expert commentaries
  • Learning and networking opportunities
  • New content posted to the Web site every two weeks
  • Sign up at

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Innovations Exchange Web Event Series

  • Next Event
    Tuesday, July 22, 2014 1-2:30 pm ET Patient- and Family-Centered Care for Children and Older Adults

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Patient- and Family-Centered Care Implications for Adults with Chronic Conditions
Image of Beverley H. Johnson

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Patient- and Family-Centered Core Concepts

  • People are treated with respect and dignity
  • Health care providers communicate and share complete and unbiased information with patients and families in ways that are affirming and useful
  • Patients and families are encouraged and supported for participation in care and decision-making at the level they choose
  • Collaboration among patients, families, and providers occurs in policy and program development and professional education, as well as in the delivery of care

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Patient- and Family-Centered Core Concepts
Patient- and family-centered care is working with patients and families, rather than to or for them
Image of physician discussing care with patient
Image of nurse and patient smiling shaking hands.

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A Broad Definition of Family …

  • In health care settings, patients are asked to define their families and how they will be involved in care and decision-making
  • The American Academy of Family Physicians (2009) defines family as “a group of individuals with a continuing legal, genetic and/or emotional relationship”

Image of a Hispanic family smiling.
Image of an Asian father having a conversation with his son.
Image of an African American family smiling.

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Why Patient- AND Family-Centered Care and not just Patient-Centered Care?

  • Individuals who are most dependent on health care are most dependent on families
    • Those with chronic conditions
    • The very young
    • The very old

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Why Patient- AND Family-Centered Care and not just Patient-Centered Care?

  • Families can be allies for quality and safety
  • Families often are the constant support across settings and assist with transitions of care
  • Families can participate in the development of a care plan and support the patient in following the plan

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Triple Aim Patient- and Family-Centered Care
Cover of Conference on Patient-and Family-Centered Care 5th International Conference Booklet.
Graphic of the Triple Aim - Triangle in which Health of Populations, Reducing Costs, and Patient Experience are at the points.
“The most direct route to the Triple Aim is via patient- and family-centered care in its fullest form.” - Don Berwick (June 5, 2012)

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Best Care at Lower Cost: The Path to Continuously Learning Health Care in America

  • Institute of Medicine Recommendation: “Involve patients and families in decisions regarding health and health care, tailored to fit their preferences” (S-23)
  • “In a learning health care system, patient needs and perspectives are factored into the design of health care processes, the creation and use of technologies, and the training of clinicians” (5-5)

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Insights From an Institute of Medicine Working Group
Image of “Challenges at the Intersection of Team-Based and Patient-Centered Health Care” article from Wynia, Matthew K., Isabelle Von Kohorn, and Pamela H. Mitchell. “Challenges at the intersection of team-based and patient-centered health care: insights from an IOM working group.” JAMA 308.13 (2012): 1327-1328.
“In high-functioning health care teams, patients are members of the team; not simply objects of the team's attention…”

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Redesign of Primary Care and the Management of Chronic Conditions

  • Self-Management Support
  • Information Sharing
  • Goal Setting
  • Action Plans
  • Follow-Up Support

Image of a physician having a consultation with a colleague
Image of a physician having a consultation with an African American woman.
Image of a Diabetes Self Management Form

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Open Notes
Screen shot from OpenNotes Web site

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Anne Arundel Medical Center in Annapolis, MD
Image of Anne Arundel Medical Center “Welcome Families” poster.
Bedside Nurse Change of Shift Report WITH the Patient and Family
Image of Anne Arundel Medical Center S.M.A.R.T discharge journal form.

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H. Lee Moffitt Cancer Center & Research Institute in Tampa, FL
Image of Partners “Advance Care Planning Helps Maintain a Sense of Wellness” article
Image of Advance Care Planning Task Force work chart

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Patient and Family Advisors for Change, Improvement, and Health Care Redesign

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Patient- and Family-Centered Best Practices

  • Senior leaders believe in the possibility and potential of patient and family partnerships
  • There is an executive champion for patient- and family-centered care
  • A designated staff liaison for collaborative endeavors facilitates the process
  • Orientation and preparation for collaboration are provided to patients, families, staff, clinicians, and leaders
  • Patient and family involvement from the beginning of a project makes a difference.

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Additional Resources
Screen shot of Institute for Patient-and Family-Centered Care Home Page
Screen shot of Institute for Patient-and Family-Centered Care tools and downloads web page

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Partnering with Patients and Families As Advisors
Image of Bernard Roberson, MSM, BA, HSC

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Frontline Innovators on Providing Patient- and Family-Centered Care
Frontline Innovators on Providing Patient- and Family-Centered Care video image

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Patients and Families As Advisors Begins With…

  • Referred by faculty, administrators, staff, students and other patient and family members
  • Must be utilizing health system services
    • Patients and families – satisfied or dissatisfied with services and come with positive recommendations for change
    • Highly recommended by faculty, staff, students and others

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Patients and Families As Advisors Begins With…
Qualities advisor should possess

  • Positive attitude
  • Willingness to assist with positive change in patient care, education, research and Patient- and Family-Centered Care initiatives
  • Ability to share their experience and insight in a balanced and objective way
  • Ability to listen to and reflect on differing points of view
  • Ability to keep information confidential
  • Willingness to look beyond their own personal issues
  • Willingness to work with others as an active member of the team

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When to Partner with Patients and Families as Advisors

  • Brainstorming sessions
  • Planning new services
  • Developing new policies, procedures
  • Implementing new policies and procedures
  • Interviewing leadership candidates
  • Educating staff, students, other personnel
  • Changing clinically relevant processes

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Partnering is a Factor in all Aspects of the Health System

  • Strategic planning
  • Management
  • Operations

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Patients and Families are Involved in the Following:

  • Patient Satisfaction
  • Electronic Personal Health Record (EPHR)
  • Family Faculty – Personal Healthcare Stories
    • University and Staff Educational Programs and Trainings
    • Conferences

Image of GRHealth Patient as Advisors Information Sheet
Image of speaker giving a talk during a learning lab session.

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Patients and Families are Involved in the Following:

  • Quality and Safety Committees
  • Ethics
  • Performance Improvement
  • Joint Commission Leadership
  • Safety and Security
  • Medication Error and Prevention
  • Discharge Education and Planning
  • Quality Unit Council Committees

Image of a roundtable discussion
Image of Training for Quality and Safety Committee

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Patients and Families are Involved in the Following:

  • Community Coalitions and
  • Outreach Initiatives
  • Renovations and New Construction
  • Projects
  • Research: Sub-Investigators
  • Board Level Committee
  • Human Resources
    • New Employee Orientation
    • Employee Interviews
  • Administrative Committees
    • Billing

Image of nurse sitting at Cancer Center Infusion area Nurses station
Image of patients wearing hard hats reviewing Cancer Center plans

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Involving Patients and Families in EVERY Aspect of Operations
Image of a patient advisor reviewing a patient chart

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Examples of Partnership
Picture of 2009 Patient Advisors

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Improving Patient and Family Centered Care Rounds Research
Image of dedication to Patricia Sodomka in Navigating Patient-and Family-Centered Care Rounds.
Image of Table of Contents from Improving Patient- and Family-Centered Care “Takes on Academic Bedside Rounds”

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Improving Patient and Family Centered Care Rounds Research
Image of Table of Contents from Improving Patient- and Family-Centered Care “Takes on Academic Bedside Rounds”

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Improving Patient and Family Centered Care Rounds Research
Graphic of “Improving Patient Rounds” from Pilot Study MCG-Picker Institute 2008-2009. Provides testimonies from family members

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Improving Patient and Family Centered Care Rounds Research
Graphic from Improving Patient Rounds - provides testimonies from nurse, student, and family member

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Collaborating with Shock Trauma Unit and Medical Illustration
Image of human body for Shock Trauma schematic
Image from trauma pamphlet explaining ICU Patient care

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Breast Health Center Redesign

  • Renovation

Image of Breast Cancer Center Entry way
Picture of a breast health center room

  • Workflow

Picture of waiting room from breast health center
Image of pamphlet from breast heath center
Image of couch and artwork in a breast health center room

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Hand Washing Initiative

  • Improving Hand Washing throughout the Organization
    • Working on Campaign
    • Auditing the Faculty and Staff
    • Confronting the Faculty and Staff
    • Rewarding the Faculty and Staff
      • Buttons

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Neurosciences Center of ExcellenceResults

  • Patient Satisfaction
    • 10th → 95th percentile
    • 75th to 90th percentile
  • Staff vacancy rate
    • 7.5% → 0%
    • Have waiting list
  • Discharges increased 15.5%
  • 62% decrease in medication errors

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Additional Resources

  • Guide to Patient and Family Engagement in Hospital Quality and Safety

Screenshot of AHRQ's Guide to Patient and Family Engagement in Hospital Quality and Safety web page.

  • Patient Centered Medical Home (PCMH) Resource Center
    • Engaging Patients and Families in the Medical Home
    • Strategies to Put Patients at the Center of Primary Care

Screenshot of the Patient Centered Medical Home Resource Pages

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The Innovations Exchange

  • Visit our Web site
    • Frontline Innovators on Providing Patient- and Family-Centered Care Videos
  • Follow us on Twitter at #AHRQIX


JUDI CONSALVO: Good afternoon, everyone. On behalf of the Agency for Healthcare Research and Quality, I'd like to welcome you to our Web event entitled Patient- and Family-Centered Care for Adults with Chronic Conditions. I'm Judi Consalvo with AHRQ's Center for Outcomes and Evidence.

We're very excited about today's topic and glad to see that you share our enthusiasm. We have over 700 who registered for this event today. Next slide, please.

Before we begin, I would like to introduce you to our webcast console. The console can be re-sized to fit your entire browser window. All the components on the console can be re-sized, moved, and minimized into the menu dock at the bottom of the console.

If the slides are too small, click on the lower right hand corner of the slide window and drag your mouse down to make it larger. Twitter functionality is available in the console for today's webcast. Please feel free to participate using the hashtag AHRQIX.

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The last 15 minutes of this Web seminar is reserved for a discussion based on questions that you submit. Questions may be submitted at any time during the presentation. Just simply click on the Q&A button at the bottom of your screen, then type your question into the Q&A box and select submit.

We welcome your questions and comments on the upcoming presentation, and look forward to an engaging dialog that will promote the spread of health care innovations. Next slide, please.

Today's slides are available by clicking on the widget at the bottom of your screen that says Download Slides. This will generate a PDF version of the presentation that you can download and save. Next slide, please.

So, the presenter that you'll hear from today is an innovator from AHRQ's Healthcare Innovations Exchange. For those of you who are new to the Innovations Exchange, I'll take just a minute to give you an overview.

AHRQ created the Innovations Exchange to speed the implementation of new and better ways of delivering health care. It offers busy health professionals and researchers a variety of opportunities to share, learn about, and ultimately adopt evidence based innovations and tools suitable for a range of health care settings and populations.

The Web site includes a searchable database of quality tools, service delivery, and policy innovations. The exchange also contains both successes and attempts, innovators' stories and lessons learned, and expert commentaries. To assist you in implementing these innovations, AHRQ also supports learning and networking opportunities such as web seminars, Tweet chats, and podcasts.

We also post new content to the Web site every two weeks on a range of topics, and hope that you will sign up to stay connected with us if you have not already done that. Next slide, please.

So this is the Innovations Exchange Web Event Series. We have a number of upcoming web events to share innovative health care strategies and promote the spread of innovations. Our next learning and networking event will take place on July 22 from 1:00 to 2:30 PM Eastern time, called Patient- and Family-Centered Care for Children and Older Adults.

To register for this Web event or receive more information, please visit our Web site at Our Web site also holds an archive of our past Web events, pod-casts, and Tweet chats, and we invite you to take a look and download those materials that may be useful to you and your practice. Next slide, please.
We will get started with today's event moderator. It's my pleasure to introduce our moderator, Ms. Beverley H. Johnson, President and Chief Executive Officer of the Institute for Patient- and Family-Centered Care.

Ms. Johnson has provided technical assistance and consultation for advancing the practice of patient- and family-centered care to over 250 hospitals, health systems, Federal, state, and provincial agencies, military treatment facilities, and community organizations.

She assists hospitals and ambulatory programs with changing organizational culture, and facilitates visioning retreats and the integration of patient- and family-centered care concepts in policies, programs, and practices, as well as in facility design and the education of health care professionals. Bev?

BEVERLEY H. JOHNSON: Thank you, Judi. It is wonderful to join you and AHRQ and all the terrific folks on the call today to talk about patient- and family-centered care and really building a system of care for older adults with chronic conditions.

I think it's important that we ground our understanding with a really shared vision of what does patient- and family-centered mean. At the Institute for Patient- and Family-Centered Care, we define this approach to care as an approach to the planning, implementation, and evaluation of health care that's grounded in mutually beneficial partnerships among patients, families, and health care professionals.

I think it's really important for all of you on the call today to really remember that phrase of mutually beneficial partnerships. The core concepts, there are only four. And it was really the researchers that helped us build the definition that originally started with nine concepts to really four.

And they're respect and dignity, information sharing, participation, and collaboration. And that respect and dignity means it's for every patient and family, that we convey respect and assure their dignity. But it also means it's for all staff and clinicians in all organizations, whether it's in a hospital, a clinic, a long term care community.

Second, this approach to care, patient- and family-centered care, changes the way we share information. We share complete and unbiased information and particularly in ways that are affirming and useful. That's what we've learned from patients and families as to how they want information shared with them.

The third is, and we know we get the best clinical outcomes, when we encourage and support the active participation of patients and families in care and decision making, and connect with them at the level they choose.

At first they may not feel that they have the confidence or the competence to be active participants in care. But if we connect with them and work in a respectful way and share useful information, they can become more engaged in their care.

And lastly, and what we will be talking about a lot today with our real expert innovator on the phone, Bernard Roberson, is this collaboration, not just in the clinical encounter, but the collaboration in redesigning our health care system. We need patients and families as partners to help us make the right decisions to build a high quality, safe health care system that is cost efficient as well.

So collaboration means collaborating in policy and program development, in professional education, in research, in, really, all ways that impact the patient and family experience.
A short definition of patient- and family-centered care is working with patients and families, not just doing to and for them. So remember that word, with. It's extremely important. And in thinking about it, I'm sure each of you in your communities are serving an increasingly diverse community.

We all define our families in our own unique ways. And I think the American Academy of Family Physicians has developed a very thoughtful, useful definition, which basically defines family as a group of individuals with a continuing legal, genetic, and/or emotional relationship with the patient.

And in thinking about it in practice, you want to make sure that your documentation systems support you to ask each patient who is their family, and how you want them involved in care. That's a critical decision. It helps get HIPAA out of the way so you can share that useful information with whomever the patient prefers.

I think in health care over the last 20 years, we've somewhat used the terms patient-centered care and patient- and family-centered care interchangeably. And I think we have to rethink that.

That little word, family, is extremely important, particularly if broadly defined, and particularly if we're talking about people with chronic conditions. They're the very people that need people to help them manage the transitions of care, manage the complexity of care, and just giving them the hope and the inspiration to continue to take the medications or the therapies.

Social isolation is a risk factor. And so as clinicians and staff, we need to think about and build that word family into how we describe our health care system.
How are families involved in other ways? I really view families as allies for quality and safety. My mom's 100 years old. And I'm part of her health care team, involved as she wants me. But I help assure she has quality care and that she's safe.

Often families are the constant across settings. And I know many of you are working on transitions of care. To think that the patient can manage that all by themselves without some form of natural support, we're fooling ourselves.

And we need to enlist families early in health care experiences, so they can be helpful across the transitions. And certainly they can help in the development of care plans and help support the patient in continuing to follow the plan.

As we think about building at the policy level, and I think so many of you are working on trying to achieve the Triple Aim. Don Berwick said two years ago at our international conference that the most direct route to the Triple Aim is via implementation of patient- and family-centered care in its fullest form.

And that means true partnerships with patients and families to improve the experience of care, to improve the health of populations, and to reduce costs. And we really need that partnership with patients and families.

A resource that you may find useful after today's webinar, if you've not read the Institute of Medicine's 2012 publication, Best Care at Lower Cost: the Path to Continuously Learning in America, I highly recommend it. And it talks throughout the publication about a learning health care system and where we need to factor in the prospectus of patients and families.

And you're going to learn more about that later in this webinar, about how you can really integrate the insights and perspectives of patients and families in health care processes, in the creation and use of technologies, and very importantly in the training of clinicians. As we build the next generation of workforce, we need to partner with patients and families.

The IOM had another interesting article that was published about, I think, a year ago. And it talked about, so many of you, I know, are working on team-based care. And in the IOM original report on this, they had all the different players on the team, but the one group that they left off were patients and families.

And so I think you might find this short article helpful to you in your work. In high functioning health care teams, patients are members of the team, not simply objects of the team's attention. So we really want to make them part of that collaborative team.

We have an opportunity in the United States to really build a robust primary care system. And as we think about redesigning primary care, I think the best practice, everyone feels, in caring for adults with chronic conditions is self management support. And I view that approach to care as basically a patient- and family-centered approach for caring for people with chronic conditions.

And in this slide, you can see the computer is really part of the conversation with that clinician and that patient, that the physician has it supporting so that real data can be shared with the patient, so they can see notes and lab work and together discuss it, that he's not standing over the patient. This looks more like a partnership picture.

And the clinical tools here were actually designed by patient and family advisers working with staff to develop tools that felt better to patients with diabetes, these are clinical diabetes tools. And they benefit by the partnership with the staff as well.

A new innovation just in the last year or so is very exciting to see is open notes. And again, it's opening up the communication. Physicians with other physicians, and including the patient and family. And that family's involved only if the patient wishes it. It's according to the patient's preference.

But it puts the patient really on the team, when the office notes or hospital notes are shared openly with the patient. It's really a safety strategy in many ways.

So I hope you'll go to this website and learn more about open notes. I like what's doing in terms of helping clinicians write in more respectful, collaborative ways with patients. It really does change the culture there.

For best practices in hospital care, the Anne Arundel Medical Center started on the patient- and family-centered journey just in 2010. And they already have 80 patient and family advisers.

And they have made an enormous step in changing the culture of their organization in that they don't have, quote, open visitation, but they welcome families 24 hours a day, 7 days a week, according to patient preference. So they're welcoming families as part of the team.

They have worked hard at changing care processes like bedside nurse change-of-shift, so it's done with the patient and family, not just geographically getting in the room, but really doing it with the patients and families as partners, essential partners, in their care.

And they also have developed a tool, the SMART Discharge tool, to help families participate in that transition planning process.

Another best practices is shown here from the Moffitt Cancer Center in Tampa. They realized that they needed to do a much better job about advance care planning and really involving patients and families in deciding how they wanted to be cared for in various situations.

And all these little boxes, I know you can't read them, but this organizational change structure shows that patient and family advisers are part of every part of this process of change. In every one of these boxes, they partner with patient and family advisers to help bring up about this change in practice.

I'd like to just highlight a moment, because Bernard is going to cover in much more depth about working with patient and family advisers, because I think that's what is most essential and the most important takeaway. You can't build a patient- and family-centered system of care without advisers.

And so the best practices for leaders are that they believe in the possibility and the potential of patient and family partnerships, that there's an executive champion to show the commitment to patient- and family-centered practice, that there's a designated staff liaison for collaborative endeavors.

And you're going to see that in the leadership role that Bernard has. And certainly that there's orientation and preparation for collaboration for patient and family advisers, but for staff and clinicians and leaders. And that you involve patients and families from the beginning in this work.

So there are a number of resources on the Institute for Patient- and Family-Centered Care website, there are many free downloads. You could just Google IPFCC and we'll pop up. And I hope these will be useful to you.

And now it's such an honor to introduce Bernard Roberson to you. We've been colleagues for a number of years. And I first met Bernard when he had joined the then-called MCG Health in Augusta, Georgia. And he was part of the implementation of the pilot unit for patient- and family-centered centered care in the Neurosciences Center of Excellence. And so he really brings a depth of knowledge and experience of how to get this started, how to move it forward, and have the pilot become the model for the health system. He currently serves as the Administrative Director for patient- and family-centered care, and the organization is called Georgia Regions Medical Center, still located in Augusta, Georgia. So it's just a pleasure to introduce Bernard to you.

BERNARD ROBERSON: Thank you, Bev, for that introduction. I'd like to talk with you today about patients and families as advisers. And it really begins with recruitment. Recruitment of your patient and family advisers is critical to the success of your program.

And where you want to start is with your faculty and your staff and your administrators, and getting them to recommend patients and families that they've worked with, patients and families that bring things to the table with them. They don't just come to the table to complain. They come to the table with changes, with ideas of making change.

And so you want to make sure you start with the people who really work with your organization on a daily basis, your faculty, your staff, your administrators. And have them to bring people in that they can work with to help move your program forward.

You must utilize patients and families that are satisfied or dissatisfied. You don't want to get everybody that's just happy with your services. You want some of those people who were not so happy, and who have some great ideas for how to fix some of the issues that they found in your organization.

And you really do want them when they come to be highly recommended. So some of the qualities your patient and family advisers should possess is they must have a positive attitude.

You want someone that's going to come there and really be positive about what they're doing, willing to assist with the change, to assist with educating faculty and staff on what it means to be a patient in that health care system, and how they can better work with the faculty and staff.

You want them to have the ability to share their experiences and insight, the ability to listen and reflect on differing points, to be able to work with everyone. You want somebody that can come in, I always tell my advisers, I want somebody that can talk to a tree and don't worry about it talking back.

And so you want them to be willing to look beyond their own personal issues and willing to work with others as active members of the team. You want folks that look like the people you serve. You want them to look like the folks that sit in your waiting room.

And you want to bring patient and families in as advisers during brainstorming sessions, and when you're planning new services, or developing new policies and procedures, or implementing new policies and procedures.

We like to say, you know, who better to help us develop our policies than the people we're developing for. And so we had to look at the opportunity to not just look at the folks who we're developing for, we want to develop with.

So we found that working with our patient and family advisers to create new policies and procedures actually helps not only the faculty and staff, but it helps the families to understand the processes that the organizations have to go through. You want to bring them in in interviewing new leadership, educating staff, changing clinical processes.

And then partnering is a factor in all aspects. You've got to look at it from strategic planning, management, and operations. We tend to involve patients and families with our patient satisfaction surveys, looking at the results. How do we improve those surveys?

The electronic personal health record, with meaningful use, it was really important for us to have a really good patient portal. And having patients and families look at the process and work with the IT team to develop the right patient portal for delivering information was very important to us.

Family faculty, these are patients and families who go into our classrooms. We're an academic medical center, and they go into our classroom, they teach alongside our regular faculty. And they talk about the things that are important to patients and families, what kind of health care provider patients and families are looking for and what's important to them.

Sorry about that. I get caught up in what I'm doing, and sometimes I forget to advance my slides.

So family faculty also is looking at those personal stories, looking at how we are to make it better. How do we move forward with creating new and advanced educational programs, looking at what it is that new health care providers can bring to the table after graduating, and how they treat their patients.

So patients and families are also involved with quality and safety committees, with the ethics committee, Joint Commission. When we had our last Joint Commission survey, we had patients and families as a part of the survey process. And I tell you, it is one of those things where the surveyors are sometimes even amazed that having patients and families there can sometimes be intimidating.

The patients and families are sitting there, they're hearing what the organization's issues are at the same time as the leadership. And sometimes it's more intimidating to the surveyors than it is to the leadership, because as health care providers, we know that we have our patients and families engaged in what we're doing as a part of what we're doing.

They are our partners. And they help us to get through these things. They help us with our safety and security, and our medication error prevention, discharge education and planning.

And even we have them on our what we call quality unit councils, where patients and families as advisers are sitting there with the Chairs and the Vice Chairs of the different departments, with the Nurse Managers and other disciplines, talking about how do we improve quality for individual units?

How do we improve the safety? How do we improve our patient satisfaction, and making sure that families are comfortable and welcome in our unit? How do we make patient- and family-centered care a top priority for our unit?

So patients and families are involved in our community coalitions and outreach initiatives. We involve them when we're doing health fairs out in the community, and they talk about what the organization does to make it better for patients and families, and how they're involved, and why are they involved.

They look at new renovations and construction projects. They are part of that. They have to sign off on the blueprints saying that they agree with what has come up as the plans for the new renovations and new construction.

We use patient and family advisers as partners on research projects as sub-investigators, board level committees, Human Resources, and with our new hires and our new employee orientation, interviewing, and then even with our administrative committees. One of the examples is our billing system. Billing is an issue in every organization.

And so we engaged our patient and family advisers to help us to create a billing system that our patients and families could understand, and even look at ways to pay their bill outside of the normal channels of going into our billing office or putting it in the mail.

And their ideas of, open it up to the web, and putting it in a manner that the patients and families understand, that it's just a click, click, click and they've got their bill paid, and they understand it, the way it looks, and the way it feels.

And then just involving them in all operations, when we're planning for things, having them at the table, having them there and having them take part in the planning process, those just strategic pieces of it, going through an affinity process that we use to help to determine what programs, what goals or tactics we're going to use to move the organization forward.

And just some examples of partnership would be– I'm sorry, I'm hitting the wrong button here– would be using them to help us improve patient- and family-centered care rounds. One of the new projects that we had, we got a grant from the Picker Institute, and we were able to invite patient and families to be sub-investigators to monitor and to audit the way rounds were taking place in our organization.

And these rounds were, having the team and being in an academic medical center, having the teams to sit down at the bedside and to set rounds at a certain time of the day.

And what we would do is after rounds would take place, the patient and family advisers as the sub-investigators, they would actually give feedback to the physician on how they communicated, how they made eye contact, how they involved the patient and family member in the rounds, and how they answered a question, if it seemed like they were rushing through the process.

And this was very important because our patients and families that were there thought that this was a really neat thing to do, to schedule rounding when families could be there. And if families couldn't be there, to have a phone number where they could be reached, and they could listen in to the rounds as the physicians went through.

And what I have here on the screen is just a picture of a rounding book that we put together on the patient- and family-centered care rounds research, and the steps that we took to improve the rounds. And just some of the things that were said about the rounds, the benefits, was, rounds this way are wonderful.

They help to ease the patient's mind. It makes it so much easier. Being able to talk to the providers, to get information, having them to sit down next to the bedside and really engage in a conversation with the patient and family members was important to our patient families.

And then just one other quote, having patient and families in a round is like taking a wall between the doctors and the patient's families away. They didn't have that barrier, they didn't feel the barrier there. And this was important to our patients and families.

And these are some the things that came out of the rounds with the sub-investigators. Just another thing, here's the nurses. Rounds with nurses help with the continuity of care, keeps people informed, keeps nurses informed, makes sure that we're all on the same page as far as patient care is concerned, encourages collaboration between the team and nurses.

Patient and family-centered care rounds requires more time and coordination. No, it didn't. It actually took less time, because the families got all the information that they needed to move forward.

And then another project that we did was collaborating with our shock trauma unit. We connected our shock trauma patient and family advisers with medical illustrators. As you know, when you're in a trauma unit you have multiple injuries. And it's hard to describe to families what's going on, and what is all the equipment that they have attached to them, the tubes and those kinds of things.

And so we connected a group of our patient and family advisers with our medical illustration team that we have in our organization. And they were able to do some animations. And these are computerized animations. I just wanted to show you what some of these things look like.

And actually what you see here, on the animations, they've made it to where it's working part, so that families can see exactly how the machines work. And when they talk about a nasogastric tube, the family knows what that is and where it is and what part of the body it's going into.

And it's done in a way that patients and families understand. It's in a language that they understand. And they are part of that.

Another project was our breast health center. And when we redesigned it, we had a group of young ladies who came in, and who talk about their privacy with going into our breast health center when they were getting their mammograms.

They would go into one room, and they would change into their gowns, and they would have to come back and sit in an area that was like a waiting room at the front of the clinic or the practice site. And everybody that walked by when the doors were open could see who was sitting there. And the women were sitting there in these gowns.

And so one of the things that came out of this was they wanted to change the way it looked. They wanted to change the perception of going to get a mammogram or going into breast health for a biopsy. And they set it up to where the women would come in, and it was a spa-like atmosphere.

And they checked in in one area, and then they went back into another area and to where they changed, and they were able to sit there as though they were waiting to get a facial or manicure, pedicure. And this relaxed them before they would go back to have their mammogram done, or before they would go back to have their biopsies done.

And once they had these things done, once they went through, there was areas in there if they wanted their spouse to be there with them, there was room for their spouse. And it still gave the women privacy to be able to do this.

And if they had to get a biopsy, they area where they had the biopsy was set up as though they were in a spa, and they were sitting next to waterfall and waiting for recuperation.
And these things were important. Every step of the way, the patient and family advisers that were a part of this, they really put thought into it. And they helped the organization to see how important it was to them, and where we were lacking in our other design.

So when we were working on hand washing, our hand washing initiative, the way to improve it, we had patients and families as a part of that. They helped us build the campaign. They helped us do auditing of the faculty and staff. They confronted the faculty and staff.

If they walked with you, or they were walking and observing, if you didn't wash your hands going into the room, and they didn't see you wash your hands as you were coming out of the room or even put on the foam, they would stop you and they would tell you. They would let you know that it's important for you to wash your hands.

It was a constant reminder. And we had patients and families throughout our organizations, just following people and getting them used to people monitoring them washing their hands. But they didn't just reprimand them when they didn't wash their hands going in or out, they also rewarded them. They gave them a button to say, “I washed”. And people understand what that means. And I'll tell you, our physicians enjoyed listening to that, because they wanted to make sure that everybody knows that they washed their hands.

So some of our results for us implementing patient- and family-centered care and working with patient and family advisers was our Neuroscience Center of Excellence. It was the first unit that we started with. When we opened the unit, it was opened with education. It was opened with all staff having to reapply for their jobs.

They were interviewed by patient and family advisers, not just the staff but also the physicians. And everybody that practiced on that unit had to go through the patient and family advisers. And I'll tell you, once we implemented that, it was amazing.

The unit was the worst unit in the hospital. And it went from the 10th to the 95th percentile in patient satisfaction. Right now it still continues to hover around the 75th to the 90th percentile. Staff vacancy rate was at 7.5., now they have a zero vacancy.

And they have many people that continue to want to go work on that unit. Wehave implemented patient and family-centered care throughout our organization, but that unit has built a culture, being the first one, that everyone is trying to mimic.

And you've got employees that want to work on that unit because of the teamwork that they have and the ability to work alongside the patients and families that helped them to get started. Discharges increased by 15.5%. And then we had a 62% decrease in medication errors. And these things were truly remarkable for our organization.

And I just want to say thank you for inviting me to speak with you. I apologize for where I get so excited that I forget to advance my slides sometimes, but hey, it all works out.

BEVERLEY H. JOHNSON: Bernard, you're wonderful. And what an inspiration to everybody on the call. Very, very exciting work. And I'm sure you have inspired folks to either advance their partnerships with patients and families or just get started on this journey. I know they'll feel, like you do, that it is the best part of your practice, the best thing you've ever done in health care.

We've got some great questions. And one of them talks about an IOM report about health literacy that was published around 2005, and looked at the issues and what we're doing in terms of supporting health literacy.

Any thoughts, Bernard, from your perspective, of other organizations that are doing this, or what specifically you've done? But you've involved patients and families to help you. Any other thoughts around health literacy?

BERNARD ROBERSON: Well, we actually have a physician in our organization that's worked really close with us to look at health literacy. And what she has done is she's just pulled together a group of our patient and family advisers to look at the materials that we put out and how we work with patients, not just patients with education, but also our limited English proficient patients. And how do we bring to them and involve them in our organization to help make changes.

And so she had been one of our biggest advocates. And one of things she's done that I really like is that she's brought them in as a separate sort of advisory council. And they're sort of an ad hoc. They don't meet every month. They meet when there's materials that they want to have reviewed, and to make sure that they understand it, that it's in a language that they understand.

And not just the language that they understand, but also if they understand the diagnosis completely. And what are some of the other ways that we can explain the diagnosis in a way that they will be able to follow it, to be compliant with the instructions that the physicians give.

And so it's all about looking at your population and bringing them in to help you to make it better.

BEVERLEY H. JOHNSON: Bernard, I think that's a great answer. It models that whenever you have an issue come up that affects patients and families, you involve them in that work. And so particularly in health literacy, you want people who are new readers or who aren't able to read to be part of that.

And it sounds like your physician is respectful of their abilities and providing the appropriate support so they can contribute meaningfully. Knowing you, I know that your office supplies extra support to make sure that they're successful.


BEVERLEY H. JOHNSON: I know on a national level, the Health Research and Education Trust will be publishing a survey later this summer that's going to look at a random sample of hospitals and their patient and family engagement practices. And part of it is around how are hospitals in the US communicating with patients and families.

It's going to look at how they're involved as advisers, how we share useful information so they can participate in shared decision making. And so I would look for that report sometime in June and July, I hope, coming out from HRET. That particular survey's been funded by the Moore Foundation.

Bernard, you also got a question about where did you get the grant from. And I think that might have been referring to the rounds grant. Did talk about a rounds grant?

BERNARD ROBERSON: It was the rounds grant. And it was a grant that was applied for. We had a champion by the name of Pat Sodomka who truly, truly moved patient- and family-centered care in our organization. And she applied for a Picker grant, and it was one of the best grants I think we've ever had.

It wasn't a whole lot of money, and I'll tell you, working with the patient and family advisers, we didn't need a whole lot of money, because all the ideas and the research and things that we got out of it was truly generated by them.

And the feedback that they were giving to the physicians, but also the feedback that they were getting from the patients and families, because they also went into the rooms afterwards to talk to the patient and family to say, what is it that you feel that we could have done better, or how the rounds could have gone better.

BEVERLEY H. JOHNSON: That's great. Well, the Picker Institute closed its doors a year ago. And they gave us, the Institute for Patient- and Family-Centered Care, their archived website, so you can go to our website and see all the past funding initiatives and products developed by the Picker Institute.

Their last set of grants related to something called Always Events, and IHI is continuing that aspect of the Picker Institute. And so you might want to look on IHI's website about Always Events.

The third part of the legacy of the Picker Institute related to long term care, and that work is being continued by Planetree. So all those are sources that you might want to look for if you're interested in that.

And I'm assuming with the person asking about where the grant came from when you were doing that work with rounds, the Macy Foundation will be coming out in June with a wonderful report very much in keeping with the topic of today's webinar.

And it's on engaging patients, families, and communities in the education of health care professionals across disciplines. So inter-professional education, and linking it to the redesign of clinical practice. So I would urge you to follow the Macy Foundation. We will be reporting about it on our website.

But I think that's exciting information coming out. We actually have more wonderful questions. You all are such a great group. This is a real pet peeve of mine, and Bernard, you take a crack at this and see what your thoughts are.

This person from University Group is talking about that patients say that the Patient Rights and Responsibilities notice that's often hanging on a wall in black type in a black frame are little more than a wall plaque. Any thoughts about how that strikes you, Bernard?

BERNARD ROBERSON: Well, one of the things that we have done is we are now printing the Patient Rights and Responsibilities. I've actually just updated our Patient Rights and Responsibilities to include the LGBT community as well, because that is an important aspect to health care. And we also have it in what we call our concierge book that we have in each of our patients room's, not just our inpatient but also in our outpatient setting.

And we're trying to really push a little more of when we do our orientation to the unit that the Patient's Rights and Responsibilities are covered. Right now my group, my patient- and family-centered care team, we make rounds on a daily basis. And we're piloting the orientation of going through the Patient Rights and Responsibilities.

So, yeah, that's one of the things that, if we're going to have it, we need to tell people about it. It should not just hang on a wall. It's just like patient- and family-centered care. Yes, I have a plaque on the wall to talk about what we do, but we've also got to tell people what it is and why it works. Reading is different than actually doing.

BEVERLEY H. JOHNSON: And I think so often they've not been developed with patients and families, so they are written in a style that's not as comfortable. And I think the more we can help people translate the overarching concepts to their experience and what's relevant for them and to really have them part of it, and how it should be displayed. Sometimes I think it almost feels scary, and it puts almost a burden.

There's an interesting question, or really, comment, in amongst the group. I'll just read it to you. Sometimes patients lack resources to cause compliance and honor of provider mission, hence patients go into despair. Also keep in mind often families are exhausted as this takes place within medical burdens.

I think we don't want to imply, and Bernard, you may have some thoughts on this as well, that this is placing a burden on patients and families. This is respecting and involving them in the ways they want. And so it can work for anyone, because it's that respective individuality and preference that grounds the way clinicians and staff work. Any thoughts you have on that, Bernard?

BERNARD ROBERSON: I'm just going to give you an example from my own personal life. Some of you know that my parents, I had both my parents in the hospital at the same time. And it is overburdening. It was a big burden.

And I will tell you, the choices that we had, the rights that we had, was very important, because I attribute my involvement and my being engaged in my dad's recovery from his stroke, and even my mom from her colon cancer, I attribute their getting better to my involvement and my sister's involvement, and how the staff really helped us to understand what was going on and what needed to take place.

When physical therapy came in with my dad and said this is what you need to do on a daily basis, and yes, we're only going to be in here for 15-20-30 minutes a day, but what you do outside of this is going to be very helpful to him. And I took that to heart. It was my choice to do that. They didn't tell me, you have to do this.

It was the choice and the rights that we had to be able to do the things that we were able to do. And I just look at patient- and family-centered care and involving and engaging patients and families, I look at that as one of those rights.

And I may not be able to do it all the time. I may be too exhausted to do it. But it's my right to be able to be there when I can be there. And we don't force that on anybody, because we know that the patients' families, they have other obligations as well.

And so I just think we need to be able to let families know that we want you there, and it is a right for you to be there. But if you can't, that's why we're here. We're here to help take care of your loved one.

BEVERLEY H. JOHNSON: You've really captured that respecting their choice. And when you don't do it that way, you really place an emotional burden. It makes it even harder, because you're denied doing what your choice is, or what you would like to do. Thank you for sharing that. That's really wonderful.

There's another thoughtful question that I think many people may share in wondering about this. How does one cause enforcement and compliance with such statements? So I'm thinking about the core concepts of patient- and family-centered care of respect and dignity, information sharing, participation, and collaboration.

How do you enforce that? You might talk a little bit about Human Resources and other ways, Bernard, or you may have other thoughts on that.

BERNARD ROBERSON: Well, I'll tell you, it starts when potential employees go to our website. When they go to the website to apply for a position here, one of the first things they're going to see is the statements on patient- and family-centered care. And they're going to see those four principles. And this is what we expect.

And then once they apply and they happen to talk to one of our talent acquisition folks, they're going to remind them of those four principles. And when they come in for an interview, they're going to be reminded of that, because a lot of them will be interviewed by patient and family advisers.

And then after that, when they come to orientation if they are hired, when they come to orientation, they're going to get an orientation on patient- and family-centered care, on the four principles of patient and family-centered care, on the voice of the patient and how that works in our organization, and why it is so important for them.

And then it goes even further, Bev. It actually goes to the point to where we also annual training. It's a part of our mandatory annual training in our organization. And then your annual evaluation, it has patient- and family-centered care as a part of that.

Your job description has patient- and family-centered care, and the expectations of your position with patient- and family-centered care. So to work in our organization, if you're going to apply, just know that you're going to have to follow the four principles.

And one of the things that I like is that the employee has to prove how they're working with patient- and family-centered care. It's not left up to the manager. The manager can look at what they're doing, and they can talk about what they've observed. But the employee has to be able to explain what did they do following those four principles.

How did you show respect and dignity to our patients and families? How did you share information? What did you do get patients and families to participate in care? And how did you collaborate with patients and families, whether it be asking them their opinions as an inpatient, or bringing in our partners, the patient and family advisers, to help you with a project. So they have–

BEVERLEY H. JOHNSON: That's great, Bernard. I think that gives them lots to work on. They can embed it in Human Resources and the vision and mission and values of the organization. I'm afraid we're just about out of time, and I want to turn it back to Judy at AHRQ, to bring our discussion to close and thank everybody for participating today.

JUDI CONSALVO: And thank you, Bev and Bernard, for a wonderful and informative presentation, and so much information for our audience to digest.

If you would like more information on patient- and family-centered care, to our audience, AHRQ has a number of resources available. I know you've gotten a lot of information today, so we invite you to take a look at the AHRQ guide to patient and family engagement and hospital quality and safety, and other resources that are on the AHRQ patient centered medical home Webpage.

And these resources are also available by clicking on the resources button at the bottom of your screen. And we invite you again to join us on July 22 for our next learning and networking event on patient- and family-centered care for children and older adults. You can visit our Web site to register. And remember to follow us on Twitter.

Once this event ends, and I really hope you all will stay on, because there's an evaluation that's going to appear on our screen. And we would really love for you to participate in this. As AHRQ plans its future resources, it's very helpful for us to learn what you get from these web events, how you might be using this information, for instance, that you just heard today.

So it also helps us to improve our offerings for future events. So please do take the time to fill that in. And again, you can contact us at any time at And thank you again so much for joining us today.

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