IPFCC Pinwheel Pages
November/December 2013
Issue 66

Welcome to the NEW Pinwheel Pages!

IPFCC is pleased to launch a new improved Pinwheel Pages e-newsletter. The goal is to provide our readers with a fresh, sleek look that is user-friendly. We hope you enjoy this new e-newsletter format, and we welcome your feedback.

Institute of Medicine Convenes PFAC Leadership Networking Meeting


On November 11, 2013, the Institute of Medicine (IOM) convened a meeting, Building the Patient and Family Advisory Leadership Network for Better Care. IPFCC’s Bev Johnson, President and CEO, and Joanna Kaufman, Information/Program Specialist, participated in this meeting, along with 123 people from all over the country. Patient and family advisors, along with staff from hospitals, health care organizations, and other entities met to improve understanding of the work of patient and family advisory councils (PFACs), share information about them, and discuss ways to enhance council communication and cooperation through technology. The group also discussed priorities for collaboration, strategies to facilitate these partnerships, and possible next steps.

PFACnetworkIPFCC's Joanna Kaufman gave a presentation as part of the panel on “Enhancing Council Communication and Cooperation Through Technology.” She presented demographic information about the individual and organizational members of the IPFCC’s PFAC Listserv. About one third of the participants are patient and family advisors; the rest are nurses, hospital administrators, consultants, and others. Joanna also shared data about the top five topics of interest: advisors, communication, family presence, human resources and education, and council structure and policy. The PFAC Listserv currently has more than 600 members from the USA, with each state represented, as well as the District of Columbia. There are also members from Canada, Australia, and New Zealand. The listserv generates lots of discussion; about 200 members sign on daily. Learn more about this active forum, and join the PFAC Listserv.

The IOM meeting included other speakers: Jim Burrows, Director of Service Excellence for Nemours; Sue Sheridan, Director of Patient Engagement for PCORI; Winthrop Hodges, Patient Advisor from Massachusetts General Hospital; Bernard Roberson, Administrative Director of Patient Family Centered Care, Georgia Regents Health System; Dennis Wagner, Co-Director Partnership for Patients Initiative, Centers for Medicare and Medicaid Services; and Maulik Joshi, President, Health Research & Educational Trust (HRET) & Senior Vice President for Research, American Hospital Association. See the agenda and learn more about the IOM meeting.

2013 World Innovation Summit for Health Launches Global Health Report on Partnership

The 2013 World Innovation Summit For Health (WISH) held December 10-11, in Doha, Qatar released the report Partnering with Patients, Families, and Communities for Health: A Global ImperativeSusan Edgman-Levitan, assisted by Carrie Brady, led the Patient and Family Engagement Forum and the development of its report. Bev Johnson, IPFCC President and CEO, participated in this exciting meeting and is a member of the Patient and Family Engagement Forum. 

The Summit
included more than 900 of the world’s leading thinkers and innovators in global health from 67 countries. …“[L]eaders and key decision-makers and influencers of global health systems and policy, including heads of state, ministers, senior government officials, academics and thinkers, as well as the most influential business leaders, [participated] to stimulate implementation of practical, sustainable and innovative solutions to tackle global health challenges.”

Research indicates patient and family engagement results in positive outcomes such as improved quality and safety, fewer errors, lower costs, better patient and family experience, and high employee satisfaction. The report explains that patient and family engagement is a powerful and essential tool that can be used to improve global health, for it “promotes effective stewardship and utilization of limited resources. “Engagement depends on flexible partnerships with local people and is applicable in any country and any health challenge.”

WISH-CroppedThe WISH report highlights “successful and diverse engagement programs from around the world” and identifies specific opportunities for action that health ministers can take to foster engagement.

In addition, the Summit published seven other forum reports on some of the most pressing global health challenges; including mental health, end-of-life care, antimicrobial resistance, and obesity. Representatives from each of the forums—made up of world-leading experts who considered the best innovations from around the globe—presented their findings during the two-day Summit.

An immediate next step for the global community is to
sign the Declaration of Engagement for Global Health. IPFCC will make the link available on its website once the Declaration is posted for signing. Individuals and organizations also can consider the following key actions:
  • Sponsor a Health Engagement Day
  • Participate in International Change Day on March 3, 2014.
Future issues of IPFCC's Pinwheel Pages will include more on the WISH initiatives.

To learn more about the Summit and the WISH Reports, including the paper from the Patient and Family Engagement Forum check out the WISH website and the WISH e-newsletter.

The proceedings are available for viewing, and the 2013 WISH Reports are available for downloading.

Inspired to Change: Improving Patient Care One Story at a Time

Book Cover smallThe newly released book, Inspired to Change: Improving Patient Care One Story at a Time, is a collection of stories of patient care, written by patients, family members, and professional caregivers. The book focuses on why patient- and family-centered care is important and how professional caregivers who embrace this approach will improve clinical outcomes and the patient and family experience.

In addition to the stories that some say “range from heartbreaking to uplifting,” each chapter includes information about opportunities to transform and improve the delivery of health care, as well as listing of lessons learned, useful resources, and recommended reading.

The editor, Linda Larin, FACHE, FACCA, Chief Administrative Officer of the Samuel and Jean Frankel Cardiovascular Center at the University of Michigan Health System, challenges readers to “gather your own stories...learn about your patients and their families…Let them inspire you to make a substantive difference.”

The book includes a forward written by IPFCC’s VP, Liz Crocker, and IPFCC’s founder and President/CEO, Bev Johnson, co-authors of Privileged Presence: Personal Stories of Connections in Healthcare.

Register Now for The 6th International Conference on Patient- and Family-Centered Care

Registration is now open for The 6th International Conference on Patient- and Family-Centered Care: Partnerships for Quality and Safety to be held August 6-8, 2014, in Vancouver, British Columbia. IPFCC is proud that Providence Health Care is providing leadership support, and the Canadian Foundation for Healthcare Improvement is providing program support.

Providence Health Care Canadian Healthcare ImprovementSmall

This unique conference attracts a significant number of participants from across the United States, Canada, the United Kingdom, Australia and several other countries. Health Care administrators, clinicians, medical educators, researchers, and architects, as well as patient and family leaders who have extensive experience in collaborating with health care professionals, will be in attendance.

The conference will include more than 100 sessions that highlight best practices in patient- and family-centered care. The majority of these sessions will be co-led by patient and family leaders and health care professionals. Major areas of focus will be:
  • Leadership for Advancing the Practice of Patient- and Family-Centered Care
  • Developing and Sustaining Effective Partnerships with Patient and Family Advisors/Leaders
  • Partnering with Patients and Families Within and Across Care Settings
  • Better Together: Changing the Concept of Families as Visitors in Hospitals and Other Health Care Facilities
  • Education for Interprofessional and Collaborative Practice
  • Research Methods and Quality Improvement Approaches
The detailed Conference Program is being finalized. Check IPFCC's website for more details, as they are announced. Register Now.

Announcing the Release of Hush Music Foundation’s Latest CDMagic Island

 The Hush Music Foundation provides music to reduce stre
ss and anxiety for children, families, and others in hospitals around Australia. The latest album in the Hush collection, The Magic Island, features music written by Australia's finest living composers and has been recorded by the Tasmanian Symphony Orchestra. A concert to launch the album took place December 7th in Hobart, Tasmania, Australia. Read about Hush founder, Dr. Catherine Crock, an Australian pioneer for patient- and family-centered care.


holly-corner LOWER

In This Issue

  • Welcome to the NEW Pinwheel Pages!

  • Institute of Medicine Convenes PFAC Informational Meeting

  • 2013 World Innovation Summit for Health Launches Global Health Report on Partnership

  • Inspired to Change: Improving Patient Care One Story at a TIme

  • Register Now for The 6th International Conference on Patient- and Family-Centered Care

  • Announcing the Release of Hush Music Foundation's latest CD

  • Minnesota Seminar a Great Success ~ Next Stop San Francisco

  • Anna Quindlen ~ How Doctors, Nurses, and Consumers Can Make One Another Better

  • Non-Profit Organization Provides Comfort to NICU Families

Minnesota Seminar Great Success ~ Next Stop California!

A special thanks to Park Nicollet and HealthPartners for providing support for the October intensive training seminar in Minnesota.

 logoParkNicollet  logoHealthPartners
The Minnesota Moving Forward with Patient- and Family-Centered Care Intensive Training Seminar had more than 400 participants, representing nearly 120 organizations from 24 states, 3 Canadian Provinces, and Saudi Arabia. We are proud that 23 Pinwheel Sponsor organizations sent 344 participants, showing their commitment to providing education and skill development for staff, clinicians, and patient and family advisors to advance patient- and family-centered care.

Over 200 staff, faculty, leaders, and patient and family advisors from the newly merged Park Nicollet and HealthPartners attended the seminar. Immediately following the seminar, Park Nicollet and HealthPartners executive leaders held a luncheon for attendees from their organization, and asked them to discuss the following three questions and write down their thoughts:
1. "What can we do across the organization to help us be even more patient- and member-* and family-centered?"
2. "How might you/your team partner with patients, members, and/or family members?"
3."What is the most important, lasting impression you will take away from the seminar?"

*NOTE: The organization includes a health plan which is why the word "member" is used above.

It is less than two months since this intensive training seminar, and amazing changes and improvements already have begun.

This is food for thought for other leaders in supporting teams who return from IPFCC's Intensive Training Seminars.

Check out photos from the Minnesota seminar on the Institute’s Facebook page.

Watch a video of Tamara Evans, a Patient Partner at Park Nicollet and HealthPartners, sharing her story at the celebratory dinner at the Minnesota seminar.

Next Stop California


goldengate bridge
Consider attending the next Moving Forward with Patient- and Family-Centered Care Intensive Training Seminar, March 31-April 3, 2014, sponsored in partnership with Stanford Hospital & Clinics, at the San Francisco Airport Marriott Waterfront. Register by January 29, 2014, to receive the Early Bird Discount! Register Now

Anna Quindlen ~ How Doctors, Nurses and Consumers Can Make One Another Better

Anna Quindlen

At the annual Jordan J. Cohen Humanism in Medicine Thought Leader Session, co-sponsored by The Arnold P. Gold Foundation and the Association of American Medical Colleges (AAMC), Pulitzer-prize winning journalist and bestselling author, Anna Quindlen, spoke to almost 1,300 medical school deans, faculty, students and residents, about Health Care in an Information Age: How Doctors, Nurses and Consumers Can Make One Another Better. Ms. Quindlen spoke about the changing relationship between doctors and patients and their need to become partners in health care.

Non-Profit Organization Provides Comfort to NICU Families

Holy Sews is a nonprofit organization that provides handmade infant burial clothing for families that experience the loss of their baby during gestational weeks 16-25. Founded by Regina Binz, who lost her son Ryan at 17 weeks gestation, Holy Sews provides handmade tiny layettes at no charge to hospitals, funeral homes, and families. Holy Sews is entirely funded by donations and all of the garments are made by volunteers.


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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.

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