April 2016
Issue 90
Email IPFCC at institute@ipfcc.org   www.twitter.com/IPFCC   www.facebook.com/IPFCC   https://www.linkedin.com/company/institute-for-patient--and-family-centered-care   www.instagram.com/IPFCC

Conference Brochure Available for The 7th International Conference on Patient- and Family-Centered Care ~ IPFCC Introduces Speakers

brochure-conf7IPFCC's 7th International Conference on Patient- and Family-Centered Care: Partnerships in Care, Interprofessional Education, and Research, will be in New York City, July 25-27, 2016. Check out the Conference Brochure to learn more about this inspiring and informative event that will showcase innovative and exemplary programs that promote partnerships with patients and families to transform the organizational culture and improve the quality, safety, and experience of care.

Eileen WhalenEileen Whalen, MHA, RN, President and Chief Operating Officer of The University of Vermont Medical Center in Burlington, Vermont, will present the Monday keynote on Partnerships in Care, Interprofessional Education, and Research. The University of Vermont (UVM) Medical Center—formerly Fletcher Allen Health Careis part of the University of Vermont Health Network, a five hospital network serving a population of more than 1 million people in Vermont and northern New York. Patient- and family-centered care is a strategic priority at UVM, and is being integrated meaningfully throughout the organization.

Eileen has over 35 years of experience in health care. Before joining UVM, Eileen served as Chief Executive Officer at Harborview Medical Center in Seattle, the largest public hospital in the State of Washington and an academic medical center within the UW Medicine Network. During Eileen's tenure as CEO at Harborview, the medical center served as one of the national pilot sites for OpenNotes, demonstrating the value of patients' access to their clinical information in a public hospital.

Eileen’s experience includes serving as Executive Vice President at the University of Arizona Medical Center in Tucson, and holding numerous leadership positions in trauma, emergency, and critical care services. She is a nationally recognized trauma systems expert and past president and founding member of the Society of Trauma Nurses. She is a published author and Board member of prominent health care societies and associations. She also brings her perspective from personal and family health care experiences to her work as an executive leader.

On Tuesday, July 26th, the plenary session, Standards and Accreditation As a Catalyst for Achieving Transformative Change: The Canadian Health Care Experience will feature Leslee Thompson, BSCN, MSCN, MBA, President and CEO of Accreditation Canada and Angela Morin, a patient and family leader.
Leslee Thompson 2

Leslee Thompson is an experienced senior executive who has led multiple public and private sector organizations through major change, including Kingston General Hospital in Ontario, where she served as President and CEO for seven years. Over the years, she held many system leadership roles including Chair of Canadian Foundation for Healthcare Improvement, Chair of Council of Academic Hospitals of Ontario, and member of the Ontario Health Innovation Council. Leslee is internationally recognized for her pioneering work on co-creating the future of health and health care with patients and families. 

Angela MorinAngela Morin is currently Co-Chair of the Kingston General Hospital Patient and Family Advisory Council and a member of the Southeast Regional Cancer Centre PFAC. Angela became a Patient and Family Experience Advisor at KGH in 2011, and she continues to partner with health care professionals in quality improvement initiatives, and policy and program development.

Angela is a member of the Client and Family-Centred Care Advisory Group for Accreditation Canada, bringing the patient voice to the 2016 Accreditation Standards that support health care providers in the implementation of client and family centred care. She is a Core Faculty Member and Collaborative Coach for the Canadian Foundation for Healthcare Improvement and is a Member of the Ontario Health Quality Council.

Angela believes partnering with patients and families at every level of the health care system is the right thing to do. Her personal experiencesas a patient and as the care partner for loved onescontinue to motivate her to bring the patient and family voice to health care.

Learn more about the other featured speakers in the Conference Brochure.

Registration is open, and early bird rates are in effect until May 23, 2016.

Primary Care Corner ~ Essentia Health's Primary Care Physician Leader Highlights the Importance of Patient and Family Partners

logoEssentiaHealthEssentia Health
, headquartered in Duluth, MN, is an integrated health system that serves patients in Minnesota, Wisconsin, North Dakota, and Idaho. In 2008, Essentia created its Patients and Families as Partners Program, which now includes 14 patient and family advisory councils in primary and specialty care as well as four patient-to-patient mentor programs. In addition, patient and family partners are engaged in more than 15 organizational committees and task forces across the health system, including its Administrative Committee for Primary Care.

Joseph Bianco, MD, FAAFP, Director of Primary Care for Essentia, remembers attending IPFCC’s Intensive Seminar in Minneapolis in the fall of 2009, when the field was “in transformation”—at the beginning of the patient-centered medical home and team-based care. Dr. Bianco uses the analogy of building a new home, “You wouldn’t hire an architect who didn’t consult you. We were building new models in primary care and needed patients involved.” After the seminar, the Essentia team hired its first Director of Patient- and Family-Centered Care, a key first step, according to Dr. Bianco.

The Essentia system decided first to build capacity in its larger clinics rather than mandating that all clinics immediately integrate patient partners. Essentia built that capacity, patient-by-patient—recruiting and vetting patients and creating ways for them to be involved. Now, almost seven years later, 14 of the 68 clinics within the system have established Patient and Family Advisory Councils.

For other systems and clinics that have not yet integrated patient partners, Dr. Bianco suggests, “Our patients and their families are an abundant source of wisdom as we navigate the stormy seas of health care delivery. To go it alone without their partnership is foolish and unwise. With patients as equal partners in this journey, our work together is more fulfilling, more meaningful, and more likely to help them reach their health goals.”

IPFCC is partnering with the Patient-Centered Primary Care Collaborative (PCPCC) as part of its Transforming Clinical Practice Initiative (TCPI) Support and Alignment Network (SAN). Learn more.

If you are already partnering with patients and families, or want to learn how, a free learning community is forming now. For more information, please contact Mary Minniti at mminniti@ipfcc.org or sign up on IPFCC's PFAC Network.

Implementation Science Workshop: Engaging Patients in Team-Based Practice Redesign—Critical Reflections on Program Design

JGIM logo
In Implementation Science Workshop: Engaging Patients in Team-Based Practice Redesign—Critical Reflections on Program Design, published online March 14, 2016 in the Journal of General Internal Medicine, Davis, et al* describe how UW Health, a large academic medical center in Wisconsin, introduced a patient engagement program to participating teams conducting a “comprehensive primary care redesign, which included strategies at the system, clinic, and care team levels.” Consultants from the Center for Patient Partnerships, at the University of Wisconsin-Madison, participated to “collaboratively develop a program which engaged volunteer patients” as part of the quality improvement team.

UW Health has nearly 300 primary care physicians across 40 primary care clinics in and around Madison, Wisconsin. The program, described more fully in the article, used a “framework adapted from the Health Canada Public involvement Continuum, by replacing ‘public’ with ‘patient.’” The framework embraces progressive levels of patient engagement, using training activities, a toolkit, and coaching, with consultant training coaches using the train-the-trainer approach.

The program used outcome measures such as penetration, acceptability, adoption, cost, and appropriateness/feasibility to evaluate patient engagement, and the study yielded positive results. For example, the initiative began with nine teams, and spread to 49 teams, and participating teams had significantly higher ratings than non-participating teams on a majority of patient experience questions. Over time, survey results showed a “significantly increased percentage of respondents believed that patients brought a vital perspective to a project...” Conditions necessary for teams to engage patients successfully included, “financial support and protected time to engage in this work, agreement about the importance of patient engagement, and a collective commitment to the work involved.”

Susan Edgman-Levitan, PA, Executive Director of the John D. Stoeckle Center for Primary Care Innovation at Massachusetts General Hospital and long-time champion for patient- and family-centered care, wrote the Teaching Commentary accompanying the article. She notes the importance of training and orientation for practice leaders, coaches, and teams. Edgman-Levitan concludes “patients have important insights and wisdom that we cannot afford to ignore” and that the primary care clinician/patient relationship “will only become deeper and more effective when we overcome our perceptions of patients and families as passive sources of data rather than active partners in care. When patients and staff come together in these shared codesign efforts, meaningful and sustainable improvements can be made.”

* Davis, S., et al. (2016). Journal of General Internal Medicine. DOI:10.1007/s11606-016-3656-8.

Better Together: Partnering With Patients and Families ~ Education and Support for New York City Hospitals

New Yorkers for Patient & Family Empowerment and its collaborator, IPFCC, with support from the United Hospital Fund, launched a multifaceted project for New York City hospitals to strengthen family presence and participation. This project is providing education and support to change the concept of families as ”visitors” and to implement policies and practices that welcome and support families as partners in care on all units, 24/7, according to patient preference.

NYC BT meeting

On March 22, 2016, at the New York Academy of Medicine, 75 hospital leaders and staff representing twenty-one New York hospitals—including nine public hospitals—and community-based advocates, plus IPFCC faculty and staff, participated in a one-day educational program. 

Feedback from the meeting was very positive. Examples of participant comments about lessons learned include:

  • This was a call to change the culture to include patients’ families as care partners.
  • Open visitation or welcoming presence can work in a big urban city like NYC.
  • The importance of including families as valuable partners and of leadership support.
  • Personal stories reinforce the critical need for families at the bedside.
  • With the right tools, we can achieve great results!

Participating hospitals have the opportunity to join in a series of five coaching calls with IPFCC faculty and peers. These calls, as well as resources in the Better Together Toolkit, will provide practical guidance for moving forward with planning and implementation, including educating and motivating staff.

Hospitals also will receive data from pre and post assessments and an update of the report, Sick, Scared & Separated from Loved Ones, which examined the visiting policies posted on websites of New York Hospitals. Some participants will also attend IPFCC’s 7th International Conference on Patient- and Family-Centered Care: Partnerships in Care, Interprofessional Education, and Research to be held in New York July 25-27, 2016.

better-together changing the concept...

This project builds on significant work of New Yorkers for Patient & Family Empowerment and IPFCC. In 2012 and 2013, New Yorkers for Patient & Family Empowerment, with assistance from NYPIRG, conducted a survey of visiting policies in the largest hospitals across New York State. Sick, Scared & Separated from Loved Ones, the resulting report, advocated against restrictive policies. In 2014, IPFCC launched an international campaign, Better Together: Partnering with Families, designed to change visiting policies in 1,000 hospitals by 2017. As part of the campaign, IPFCC developed a free online toolkit of materials for hospitals.

Please Send IPFCC Your Patient and Family Advisory Council’s Most Recent Annual Report
IPFCC’s website includes a section devoted to Annual Reports of Patient and Family Advisory Councils and Committees (PFACs). In addition to describing annual reports and their benefits, IPFCC includes links to annual reports from a wide variety of organizations. This provides a treasure trove of information on how PFACs can work, and on the wonderful progress that is being made to advance patient- and family-centered care!

IPFCC strives to bring the most up-to-date resources to its readers, and is looking to add even more annual reports to this page. If your organization’s current report is not listed on the IPFCC page, please send your latest annual report to institute@ipfcc.org for posting.

IPFCC's Chicago Seminar A Great Success!

Next Stop: San Antonio,Texas
Save the Date: November 16-18, 2016

logoLurieChildrensA special thanks to Ann & Robert H. Lurie Children’s Hospital of Chicago for its leadership support in bringing the Moving Forward with Patient- and Family-Centered Care: Partnerships for Quality and Safety ~ An Intensive Training Seminar, to Chicago, Illinois April 4-6, 2016.

Also thanks to IPFCC’s extraordinary faculty, guest faculty, and the participants who came from 82 organizations from 31 states, 4 Canadian provinces, The Netherlands, and South Korea.

Seminar participants provided positive feedback, such as:

  • This was an amazing experience leaving me with a new outlook and perspective in my role and purpose as a health care provider.
  • I thought I was very patient- and family-centered but learned that I have a long way to go. Excellent seminar.
  • Exceeded expectations! Thanks to your team for all of the HARD work behind the scenes to make this an EXCELLENT seminar. Well done. Well done!
  • Great seminar! Very engaging!
  • While it was a lot packed into each day and I am exhausted leaving Chicago, it was well worth it.
  • Loved the patient/family perspective, glad these individuals were part of the faculty.
  • Excellent reference materials provided and speakers were experts in the field.

small group chicago
Creating action plans in a faculty-led small group at the Chicago Seminar.

Onslow Memorial Hospital
 in Jacksonville, North Carolina, the recipient of an IPFCC Pinwheel Sponsor Scholarship, sent a team to the seminar—three patient and family advisors, two nurse managers, an assistant nurse manager, and the director of imaging services. Onslow appreciated being able to add the second nurse 
manager, Tasha Wells, to the team, as a result of the Pinwheel Scholarship. The Onslow team reported having a “wonderful time” and one member "felt honored to be able to attend the IPFCC Seminar in Chicago." 

Onslow pic cropped
Seminar Team from Onslow Memorial Hospital: Thomas Jenkins, Judy Fraser, Dianna Hawkins, Carol Nelson, Gloria Thompson, Tasha Wells, Maurice Jackson (not pictured).

Save the Date: November 16-18, 2016

IPFCC’s Moving Forward with Patient- and Family-Centered Care, Partnerships for Quality & Safety, is going to San Antonio Texas!

Coming Soon ~ Details and Registration

  • Conference Brochure Available for The 7th International Conference on Patient- and Family-Centered Care ~ IPFCC Introduces Speakers
  • Primary Care Corner ~ Essentia Health's Primary Care Physician Leader Highlights the Importance of Patient and Family Partners 
  • Implementation Science Workshop: Engaging Patients in Team-Based Practice Redesign—Critical Reflections on Program Design
  • Better Together: Partnering With Patients and Families ~ Education and Support for New York City Hospitals
  • Please Send IPFCC Your Patient and Family Advisory Council’s Most Recent Annual Report
  • IPFCC's Chicago Seminar A Great Success!  ~  Next Stop: San Antonio, Texas  ~  Save the Date: November 16-18, 2016
  • Association Found Between Higher Ratings of the Patient Experience and Better Clinical Outcomes
  • IPFCC Webinars
  • UMHS New Child and Adolescent Psychiatric Unit Opening ~ Patients and Families Engaged in Design
  • Family Presence During Pediatric Tracheal Intubations
  • PFAC Network ~ Vibrant Online Community
  • Don't Miss The 7th International Conference on Patient- and Family-Centered Care

Association Found Between Higher Ratings of the Patient Experience and Better Clinical Outcomes

Cover J P ExpA new study
published in the Journal of Patient Experience* analyzed data from more than 3,000 US Hospitals from the Centers for Medicare and Medicaid Services (CMS) “Hospital Comp
are” star ratings of hospitals, based on patient experience as reported by HCAHPS patient surveys and Medicare claims data from Hospital Compare. 

The study found better patient experience, as indicated by higher star ratings, is associated with favorable clinical outcomes, such as lower rates of unplanned readmissions within 30 days, and lower rates of in-hospital complications such as “central line-associated bloodstream infection, postsurgical deep venous thrombosis, joint replacement complications, and a composite measure for all serious complications.” 

The results of the study consistently showed …”the associations between higher star ratings for patient experience and lower 30-day readmissions across all of the different diagnoses tested in this study. As the quality of patient experience is deeply rooted in the quality of caregiver communication, it is not unexpected to see the strongest signal of association between patient experience and outcome in the rate of unplanned hospital readmissions, as readmissions can depend on the effectiveness of communication pertaining to discharge instructions.”

The authors “believe that the results of this study are important in that they underscore the value of measuring patient experience as a distinctly meaningful dimension of health-care quality.”

*Treziak, S., et al. (2016). Association Between Medicare Summary Star Ratings for Patient Experience and Clinical Outcomes in US HospitalsJournal of Patient Experience

IPFCC Webinars 

Upcoming IPFCC Webinars:

Communication Essentials for Patient- and Family-Centered Care
April 21, 2016

Join Jill Golde, Partner, Language of Caring, to learn effective communication strategies, identify concrete skills to personalize care and communicate with empathy, and review strategies to achieve better patient outcomes and higher patient satisfaction scores.

Involving Patient and Family Advisors as Teachers in Medical Education
April 28, 2016

Join Kelly Parent, IPFCC Program Specialist for Patient and Family Partnerships and Administrator for the PFAC Network and PFCC Program Specialist for Quality and Safety, University of Michigan Health System; Kate Balzer, volunteer patient advisor with the University of Michigan Health System; and Genevieve Allen, first year medical student at University of Michigan, to learn more about how University of Michigan’s Medical School engaged PFCC staff and advisors to develop and implement coursework that incorporates PFCC principles in classroom, simulation labs, and home settings.

Beyond the Startup of a Patient and Family Advisory Council—An Advanced Session for Seasoned Councils

May 10, 2016

Join Julie Moretz, Associate Vice Chancellor for Patient- and Family-Centered Care at the University of Arkansas for Medical Sciences, and Patty Black, Program Coordinator for Patient-Centered Care for PeaceHealth Medical Group, as they identify strategies to expand your advisory council's role, make a greater difference in your organization, and overcome challenges.

IPFCC’s webinars are a cost-effective educational resource. Cost is per line, so a group of any size can participate from the same location on one line. Handouts and supplemental resources are included with registration. Want people to participate from more than one location? IPFCC offers a discount for additional lines.                           

Learn more about webinar faculty, learning objectives, and Pinwheel Sponsor discounts.

UMHS Child and Adolescent Psychiatric Unit Opening ~ Patients and Families Engaged in Design Process


C.S. Mott Children’s Hospital
, part of the University of Michigan Health System (UMHS), recently completed construction of the Nyman Family Unit for Child and Adolescent Mental Health and Wellness, a state-of-the-art 16-bed pediatric inpatient psychiatric unit. The 16,000 square foot unit, which opened in April 2016, provides inpatient care for pediatric patients through the age of 17, and can accept psychiatric patients who may require management of co-occurring medical illness. According to Child and Adolescent Psychiatry Inpatient Director, Ben Biermann, MD, PhD this new unit “will allow us to treat our patients in a beautiful, state-of-the-art setting designed to foster mental wellness and promote healing.”

UMHS—one of IPFCC’s Pinwheel Sponsors—has a robust Patient- and Family-Centered Care Program, so, naturally patient and family advisors were involved in planning the design of this new unit, as well as creating patient- and family-centered processes. One of the many family friendly features of the design of this unit is that “[a]ll private rooms have space for an adult family member to stay with the child overnight, reflecting the important role family plays in the healing environment.” The unit’s commitment to partnering with patients and families is reflected in its Family Presence policy, which supports 24/7 presence of family—as desired by the patient—as well as patient and family participation in medical rounds.

Read more to learn about other features. 

Safety of Family Presence During Pediatric Tracheal Intubations  
JAMA PEdiatrics

Sanders and colleagues* authored an investigative study, Family Presence During Pediatric Tracheal Intubations, published March 2016, online in JAMA Pediatrics. They report that while there is a wide variability in family presence during tracheal intubations in pediatric intensive care units, family presence was not associated with “worse first attempt success,” adverse associated events, oxygen desaturation, or “higher team stress level.” The authors conclude, based on their data, that family presence during tracheal intubations “can be safely implemented as part of a family-centered model in the PICU.”

The article includes a summary of the potential barriers to family presence during procedures as well as the potential benefits. The authors emphasize the nearly 30 year advocacy for the merits of family presence during resuscitation efforts and invasive procedures, noting the multiple organizations** that have issued position papers supporting the practice. “Family-Centered Care, which supports FP during procedures, is now a widely accepted standard at health care facilities that care for children.”

See related article on this subject in the March 2016 Pinwheel Pages.

*Sanders, R. C., et al. (2016).
JAMA Pediatrics.

**Emergency Nurses Association, American Association of Critical Care Nurses, American Hearing Association, and American Academy of Pediatrics.

PFAC Network ~ Vibrant Online Community

PFACnetworkThe PFAC Network—IPFCC’s online interactive forum dedicated to advancing patient- and family-centered care—is now nearly 1,500 members strong! While the US and Canada hold the most memberships, the Network boasts participants from nearly all continents. 

The PFAC Network brings together a diverse group of people who share a similar passion—to create meaningful and effective partnerships among patients, family members, administrators, clinicians, staff, researchers, faculty, and students. We encourage you to join the Network AND participate in the discussions.

Upon joining, you will have access to:

  • Group discussions where you can share best practices, learn from each other’s challenges, respond to questions, and post queries of your own;
  • Smaller focused discussions on particular topics or themes. There are currently three “special topic” groups for primary and ambulatory care; partnerships in research; and statewide PFACs. With member interest, additional special topic groups can be created;
  • Shared documents, such as policies, forms, and articles, via the community file cabinet;
  • Shared photos illustrating PFCC facility design, amenities, and events; and
  • Community calendar postings of PFCC-related conferences, webinars, and seminars.

The potential of this site is great but only if we all commit to learning and sharing with each other. We encourage you to “listen, linger, and learn!”

IPFCC is grateful to Pinwheel Sponsors—The Children’s Hospital of Philadelphia, Providence Health Care, Boston Children’s Hospital, and Anne Arundel Medical Center—for their support of the PFAC Network. 

For more information, please email Kelly Parent at kparent@ipfcc.org

Join the PFAC Network.


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About Us

Founded in 1992 as a nonprofit organization, the Institute for Patient- and Family-Centered Care works to advance the understanding and practice of patient- and family-centered care in all settings where individuals and families receive health care.

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Don't Miss

The 7th International Conference on Patient- and Family-Centered Care: 
Partnerships in Care, Interprofessional Education, and Research

2016 Int'l Conference brochure - smaller

July 25-27,

New York City

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Conference Brochure 

Register Now

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With leadership support from:

NYU Hassenfeld

And program support for Partnerships in Research from:

Patient-Centered Outcomes Research Institute (PCORI)

Institute for Patient- and Family-Centered Care
6917 Arlington Road, Suite 309 • Bethesda, MD 20814