January 2019
Issue 118

IPFCC at Work
IPFCC's 9th International Conference on Patient- and Family-Centered Care
Planning is already underway for the 2020 Conference and we will be announcing the Call for Abstracts process in the spring. Start thinking now about innovative projects that your organization may want to present!

Cara Coleman Shares Family Experience

In the Conversation Project’s blog, Talking Matters, posted on December 11, 2018, Cara talks about her family’s struggles to initiate conversations with providers about end-of-life wishes for their daughter, Justice Hope. Cara is a Family Leader and IPFCC’s Patient and Family Partnerships Specialist.
Read the blog

Calling All Pinwheel Sponsors!
As 2019 begins, IPFCC encourages current Pinwheel Sponsors to join us for another exciting year. To continue to enjoy the many benefits associated with sponsorship, simply complete the online renewal form.
Upcoming Webinars
PFCC in the Field 
IPFCC is partnering with the Patient-Centered Primary Care Collaborative (PCPCC) as part of its Transforming Clinical Practice Initiative (TCPI) Support Alignment Network (SAN).
This section brings stories from the field, from this initiative and others, right to your inbox. Some stories describe programs that have just begun; others describe more well-developed programs.
Valley Health System: Outpatient Oncology PFAC
As part of its Patient and Family Centered Care initiative, Valley Health System in New Jersey has eight Patient and Family Advisory Councils – including one for outpatient oncology. The PFAC collaborates on a number of projects including a Cancer Survivor Navigation Binder and a quarterly newsletter, Cancer Creates.
Read more
Valley Health System_logo

Resources and Opportunities
Implementing OpenNotes
opennoteslogo2014OpenNotes is a movement dedicated to making health care more open and transparent by encouraging doctors, nurses, therapists, and others to share their visit notes with patients. Sharing clinical notes is a patient- and family-centered best practice. A newly released White Paper looks at implementation across 26 health systems and suggests that multiple factors, including portal navigation, contribute to the low rate at which notes are actually being opened by patients with portal accounts.
Read the White Paper

Addressing the Problems of Quality Measurement
An article in the December 10, 2018 issue of NEJM Catalyst summarizes the results of a “Buzz Survey” looking at quality measurement in health care. Respondents, members of the NEJM Insights Council, identified a number of problems including lack of consensus on how to measure quality, flawed metrics, and differences between clinician and patient definitions of “quality.”
Read the full report

Patient Engagement from Both Sides of the Bed
In an article in the December 4, 2018 issue of NEJM Catalyst, Susan Hassmiller, RN, PhD, FAAN, describes her experience as a spouse during her husband’s last ten days of life in an ICU. Despite being a nurse and senior advisor for the Robert Wood Johnson Foundation, she felt left out of the health care decision-making process. Subsequently, she and a colleague conducted a literature search and interviewed 30 health care executives about patient engagement. She advocates for intentional engagement that goes beyond simply using tools and checklists.
nejm catalyst
Read the article

pfcc connect Free Virtual Discussions
Thank you to everyone who has taken part in one of our informal virtual conversations! It has been amazing to hear your thoughts, ideas, questions, and experiences on a variety of topics. Our next virtual discussion is Thursday, February 7th at 1 PM ET on the Use of E-Tools in Healthcare. If you are not one already, become a member of our free online learning community, PFCC.Connect, today to get more details, watch recordings of past discussions, and stay updated on future discussions coming soon!
Join PFCC.Connect Today!
Best wishes for a productive 2019
from the IPFCC Team!
Institute for Patient- and Family-Centered Care
6917 Arlington Road, Suite 309 • Bethesda, MD 20814