September 2013, Issue 64

Moving Forward with Patient-

and Family-Centered Care

Partnerships for Quality & Safety

An Intensive Training Seminar

March 31-April 3, 2014

San Francisco Airport Marriott Waterfront
Burlingame, CA

Registration Coming Soon

Combine Business and Pleasure ~ Start Planning Your Next Summer Vacation to Vancouver, BC
IPFCC's Spring 2014 Intensive Training Seminar Going to California!
OpenNotes ~ Inviting Patients to Read Their Doctors' Notes
2013 Patient-Centered Design NICU Winners Announced
IPFCC Updates and Expands Website Section on Primary Care/Patient-Centered Medical Home
Institute for Patient- and
Family-Centered Care
6917 Arlington Road, Suite 309
Bethesda, MD 20814
P: 301 652-0281
F: 301 652-0186
Combine Business and Pleasure ~ Start Planning Your Next Summer Vacation to Vancouver, BC

From the desk of Bev Johnson, President & CEO, Institute for Patient- and Family-Centered Care:

This August, I had the wonderful opportunity to combine my work with health care organizations and a family vacation. The Alaska Federal Health Care Partnership asked me to lead all-day educational programs on "Best Practices in Patient- and Family-Centered Care" in Fairbanks and Anchorage. My husband joined me in Anchorage, we traveled by the Alaska Railroad Coastal Classic to Seward. We boarded a small cruise ship in Seward and traveled the extraordinarily beautiful intercoastal route to Vancouver, BC. Spectacular glaciers, adorable sea otters and humpback whales, and bears catching salmon for lunch were all part of our trip.

A highlight of our trip was the beautiful city of Vancouver and the nearby community of Victoria. For those of you contemplating joining IPFCC for The 6th International Conference on Patient- and Family-Centered Care: Partnerships for Quality and Safety next August, I want to share with you some of what Vancouver has to offer. On our trip, we stayed at The Westin Bayshore, Vancouver, the fabulous site for IPFCC's upcoming Conference, August 6-8, 2014. The hotel is located on the water, in walking or biking distance to the city's famous Stanley Park. We rode the Hop On, Hop Off Trolley and easily experienced the highlights of the park and the city. We had two lovely meals at Lift, a restaurant next door to the hotel that is mostly glass and hangs out over the water. The delightful Teahouse restaurant in Stanley Park has one of the best sunset views in Vancouver and good food. A lovely garden in the city is the Dr. Sun Yat-Sen Classical Chinese Scholar's Garden. In Victoria, we visited the beautiful Butchart Gardens, enjoyed high tea at The Fairmont Empress Hotel, and toured the Royal BC Museum. For individuals and families who like adventures, options include the Skyride Tramway to the Peak of Vancouver, a float plane trip, and a ride on a catamaran. On a tight budget? Many of Vancouver's best sites are free.

I encourage you to consider joining IPFCC and our conference partners, Providence Health Care, providing leadership support, and the Canadian Foundation for Healthcare Improvement, providing program support, at the 2014 Conference in Vancouver, BC. This meeting will provide a superb educational experience on patient- and family-centered care with outstanding speakers. The special conference hotel discounted rates extend from August 3rd through August 9th to encourage attendees to come early, stay late, and enjoy wonderful Vancouver. Start planning your August 2014 Canadian vacation now.                

Read more about IPFCC's International Conference on Patient- and Family-Centered Care: Partnerships for Quality and Safety. Registration opening soon.

Update On Abstracts and Registration

Thanks to all who submitted abstracts to IPFCC for The 6th International Conference on Patient- and Family-Centered Care: Partnerships for Quality and Safety. The response was fantastic with more than 425 abstract submissions! The Institute's large panel of nationally and internationally respected experts in patient- and family-centered care—including patients and family leaders, health care administrators, managers, staff, and clinicians—will review the hundreds of abstracts submitted, and will select those abstracts that most clearly address the Conference topic criteria. Notifications should be complete in December 2013.

Conference registration will be open soon. Check the IPFCC website for updates.

IPFCC's Spring 2014 Intensive Training Seminar Going to California!

  Fall 2013 Seminar in Minnesota is at capacity!

Thanks to all who have registered for the Fall 2013 seminar to be held next month in Minnesota, sponsored in partnership with Park Nicollet Health Partners.  Registration for that seminar is now filled to capacity. Already registered? Check out the local attractions...from the Mall of America, to the Twin Cities or beyond...


IPFCC is pleased to announce that IPFCC's Spring 2014 Moving Forward with Patient-
and Family-Centered Care ~ Partnerships for Quality & Safety will be held March 31-April 3, 2014, sponsored in partnership with Stanford Hospital & Clinics, at the 
San Francisco Airport Marriott Waterfront.
 Registration open soon.

Read more about Intensive Training Seminars.

OpenNotes ~ Inviting Patients to Read Their Doctors' Notes

In 2010, the OpenNotes* project started "as a yearlong experiment to investigate patients and doctors' attitudes about sharing a visit note." The investigators invited patients of more than 100 primary care doctors from three diverse medical centers—Beth Israel Deaconess Medical Center (BIDMC), Geisinger Health System, and Harborview Medical Center—to read their doctor's online notes. The goal was "to help patients become more actively involved in their care and to draw patients and their health care team closer together."

The findings of the initial study are reported in Inviting Patients to Read Their Doctors' Notes: A Quasi-experimental Study and a Look Ahead, published in the Annals of Internal Medicine, October 2, 2012. In summary, patients responded with enthusiasm—they used the notes, reported important benefits, and were rarely confused, or upset by what they read. They felt more in control of their care, reported better understanding of their health and conditions, and were more likely to take their medications. The doctors reported minimal impact on their workflow, although many reported that the way in which they took notes changed to make them more understandable for the patients. Clinicians can provide patients with access to visit notes electronically, or they can rely on low-tech means by providing print copies of the notes at the end of a visit or later by mail.

As a result of these positive study results, Geisinger Medical Center opened notes to more than 100,000 patients and Beth Israel Deaconess Medical Center is opening notes from all specialties. Who else is sharing notes? The University of Texas MD Anderson Cancer Center, which uses a secure web-based portal, gives access to patients and their referring physicians to their records including doctor's notes. The Veterans Administration has opened notes to a million patients. OpenNotes can include access to notes written by doctors, nurses, or other clinicians. Some participating organizations are already planning to implement OpenNotes access for inpatients as well as outpatients.

Tom Delbanco, MD and Jan Walker, RN, MBA, co-principal investigators from BIDMC, believe that "fully transparent, open medical records will not only help patients and their families, but also their doctors, nurses, physician assistants, social workers, physical or occupational therapists, and anyone who provides or receives care...OpenNotes does not depend on a computer."

Tom and Jan envision that OpenNotes will become a new standard of practice, and are looking to learn what works well, and what doesn't. They ask the questions "Does OpenNotes make care safer? Does it improve the course of a chronic illness? Might it make care more efficient and save money?" Patients and health care providers are invited to join this project. Learn how...

Check out this video which shares patient and clinician perspectives on OpenNotes, other articles about OpenNotes, and Dave deBronkart's blog posting on this subject on the

*OpenNotes is supported primarily by the Robert Wood Johnson Foundation's Pioneer Portfolio, with additional funding from the Drane Family Fund and the Florence and Richard Koplow Charitable Foundation.

Staff News ~ Patients Participate in Training Hospital Employees

IPFCC's Joanna Kaufman, Program/Information Specialist, along with two training facilitators from Adventist HealthCare Center on Health Disparities delivered three, 4-hour trainings in Maryland for admission and access supervisors and front-line staff on the collection of patient race, ethnicity, and preferred language data from hospital patients at admission. This event was funded by the Maryland Health Services Cost Review Commission (HSCRC). Patients participated in a panel discussion in which they shared comments and answered questions about their experiences of race, ethnicity, and preferred language data collection, providing the patient's perspective. Maryland is the only state in the nation that included patients in this training.

2013 Patient-Centered Design NICU Winners Announced

The Institute for Patient-Centered Design, Inc., "founded by patients and design professionals with the purpose of giving patients a voice in the development of the healing environment," is pleased to announce the top three winning submissions in the 2013 Patient & Family Centered NICU Design Competition. The three winning teams are Stantec Architecture Ltd. for Hospital for Sick Children in Toronto; McMillan Pazdan Smith Architecture for Bon Secours St. Francis Health System (Eastside Campus) in Greenville, SC; and Hord Coplan Macht, Inc. for MedStar Franklin Square Medical Center in Baltimore. First, second, and third place titles will be awarded during the Patient-Centered Design Reception, where the full-scale model of the Patient- and Family-Centered NICU patient room, inspired by the top submissions, will be unveiled on opening night of the 2013 Healthcare Design Conference in November.

IPFCC Updates and Expands Website Section on Primary Care/Patient-Centered Medical Home

Check out the revised and updated Primary Care/Medical Home section on the IPFCC website. Under the tab for Special Topics, these revised pages include new and updated information on primary care, patient-centered medical homes in adult and pediatric practices, links to the recent American Academy of Pediatrics/National Center for Medical Home Implementation monograph, Positioning the Family and Patient at the Center: A Guide to Family and Patient Partnership in the Medical Home, recommendations, promising practices, and profiles about organizations that are making a difference in the way that health care is being delivered. This section is a work in progress, so check back as more information will be added. We welcome your feedback.

Pennsylvania-Specific Patient- and Family-Centered Care Guidebook

The Hospital & HealthSystem Association of Pennsylvania (HAP) released a Guidebook on Patient- and Family-Centered Care to help Pennsylvania hospitals implement patient and family engagement initiatives. This resource provides assessment tools to measure the quality of the patient experience, and explains how to use assessment results to develop patient and family advisory groups and other patient- and family-centered care strategies. Although the Guidebook includes "Pennsylvania-Specific" information about Pennsylvania-based practices, the Guidebook may be of use to those outside of the state as well. The Guidebook was developed in collaboration with HAP's Pennsylvania Hospital Engagement Network (HEN) and includes resource tools from the Institute for Patient- and Family-Centered Care.

Thanks to Our College Intern

IPFCC was delighted to have Anna Elder as an intern before she returned to Northwestern University for her senior year. Anna's time at the Institute included working on bibliographies on medical home, primary care, bedside change of shift report, and family presence. She also contributed greatly to IPFCC's expansion of the website section on Primary Care/Medical Home.

Anna is studying anthropology and Spanish, and recently returned from one year studying in Santiago, Chile. She has an interest in food anthropology, and hopes to pursue that professionally in South America following her graduation. In her spare time, Anna plays the viola for one of the Northwestern University orchestras and enjoys competing on the school's club volleyball team.

It's been a pleasure to have Anna on our team, and we wish her every success.

October is Patient-Centered Care Awareness Month

October is Patient-Centered Care Awareness Month, an international awareness-building campaign initiated by Planetree to commemorate the progress "toward making patient-centered care a reality and to build momentum for further progress through education and collaboration." This year's theme is Compassion in Action. Learn More....

Consumer Reports Now Issues Hospital Ratings

Consumer Reports now issues hospital ratings, using data on patient experience and outcomes from a variety of public sources. Both the safety score and the rating on patient outcomes focus on multiple categories. Also, HCAHPS measures, developed by AHRQ are used to report on the patient experience, and two measures—use of electronic medical records and appropriate use of scanning are measures for hospital practices. Learn more about how hospitals are rated and the information can be used. Subscribers may access hospital ratings.