July/August 2018
Issue 115

IPFCC at Work
New Research on Patient and Family Advisory Councils
Read IPFCC’s new PFAC study, funded by the New York State Health Foundation. Share it with others in your organization! Although it focuses on New York, the report’s findings about PFACs' performance and impact on hospital strategy and operations and correlation with experience of care and safety outcomes will be of interest to anyone who wants to start a PFAC or strengthen an existing one.
Download the full report
NYS PFAC Report Cover

See Resources and Opportunities below for additional materials related to PFACs.

Peer Support: A Roadmap
peer-mentor-programsWith funding from the Patient-Centered Outcomes Research Institute (PCORI), the Johns Hopkins Armstrong Institute for Patient Safety and Quality has developed a new guide for creating and maintaining peer support programs. In compiling the guide, the project team partnered with seven well-established peer support programs in the US. A national workshop was also held with program staff, the partner programs, and other people interested in peer support programs, including Deborah Dokken, IPFCC’s Coordinator for Patient and Family Partnerships.
Access the Roadmap
See additional IPFCC Resources about Peer Support

Improving Hospital Outcomes Through Patient Engagement: The i-HOPE Study
The i-HOPE study convened a two-day meeting in July to define a research agenda to improve the outcomes and care experiences of hospitalized patients, and their families and caregivers. The meeting involved over 45 stakeholders representing patient and professional organizations – including Marie Abraham, IPFCC’s VP for Programming and Publications. Stakeholders prioritized 11 questions (from almost 800 submissions) and final results will be disseminated soon.
Visit I-HOPE’s website for more details

Advance Care Planning in Primary Care
In a four-year PCORI-funded study focused on better aligning health care with preferences of seriously ill patients, researchers are comparing differences between advanced care planning (ACP) offered by the clinician or provided by the primary care team. Utilizing the Serious Illness Care Program, this study spans seven practice-based research network across the U.S. and Canada.  Mary Minniti, Senior Policy and Program Specialist, IPFCC is serving in a leadership role for patient and family engagement throughout all phases of the project.
metalarc logo

IPFCC has been engaged by the Maryland Health Care Commission (MHCC) to create a Patient and Family Advisory Council (PFAC) Guidance Document for ambulatory practices in Maryland. We are actively recruiting practices (both with and without an established PFAC) to provide feedback on the guidance document so it truly meets Maryland’s practice needs. Each practice will receive an honorarium for their time.

There are are two ways to participate:
  • Take part in a virtual focus group to be held on Thursday, September 13 at 1 PM ET to discuss the content and layout of the document.
  • Take part in field-testing the document in your practice. Field-testing will begin in October/November.
If you are interested, please fill out this short survey to give us more background information about your practice. For more information or if you have any questions, please email Ushma Patel at upatel@ipfcc.org.

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.
Mid Coast Medical Group
Mid Coast Medical Group_Logo Cntrd RGB200 WEB Mid Coast Medical Group (MCMG) is comprised of more than 100 providers in 4 primary care and 18 specialty practices located in Bath, Brunswick, and Topsham, Maine. MCMG is a department of Mid Coast Hospital, which is part of Mid Coast–Parkview Health, a dynamic health care system addressing a full continuum of community health, wellness, and prevention needs. MCMG's Patient Advisory Group was restructured in January 2018 and has completed a number of collaborative projects as part of its TCPi work.
Read more

Patient-Centered Pilot Measurement Projects
With support from the Robert Wood Johnson Foundation, the American Institutes for Research (AIR) solicited proposals for small-scale pilot projects implementing the five principles for patient-centered measurement. In June 2018, four institutions received awards for pilot projects: University of North Carolina at Chapel Hill, National Coalition for Cancer Survivorship, George Washington University, and Oregon State University.
More information

Resources and Opportunities
Patient and Family Advisory Council Annual Reports
IPFCC’s NYS PFAC study reinforced a number of best practices employed by exemplary PFACs, including the need for annual reporting. Review recent Annual Reports from a number of organizations, summarizing the work of their PFACs and patient and family advisors.

If your organization’s PFAC has a new annual report, please contact Annette Lee, alee@ipfcc.org to add it to IPFCC’s website. 

Resident and Family Councils for Nursing Homes
To improve the quality of services provided in nursing homes across the Commonwealth of Massachusetts, the Department of Public Health has launched a Resident and Family Council Engagement Initiative.

Review various resources, including the Strengthening Resident & Family Council: Activity Guide, developed for nursing homes in this initiative.

Pediatric kit cover 2 End-of-Life Care: Pediatric Starter Kit
An initiative of the Institute for Healthcare Improvement (IHI), the Conversation Project, is dedicated tohelping people talk with their families and loved ones about their wishes for end-of-life care. A number of “starter kits” are available, including a new, free, Pediatric Starter Kit, to help parents have these conversations with their seriously ill children. Parent advisors were directly involved in the development of the pediatric kit.
Neighborhood-Level Health Data: New Online Resource
The recently launched City Health Dashboard is an online resource with community-level health, social and economic data for the 500 largest cities in the US. Developed by the Department of Population Health at NYU School of Medicine with support from the Robert Wood Johnson Foundation, the Dashboard reports on 36 key measures of health.
Access the Dashboard

pfcc connect Join and Win Prizes!
With the success of our spring recruitment contest, we have decided to hold another recruitment contest for the fall! Join our free online community, PFCC.Connect, and encourage others to join anytime between now and the end of September and be entered to win the following great prizes:
  • For new members who are in the role of a patient family advisor, you will be entered in a drawing to win a copy of Words of Advice.
  • For any current members of PFCC.Connect that recruit new members (especially patient and family advisors), you will be entered in a drawing to win a copy of Privileged Presence. Be sure and have your referrals enter your name into the comment box underneath the Referral Source.
  • The individual who recruits the most new PFCC.Connect members by October 1 will receive a free IPFCC webinar registration.
More information about these publications can be found here.
Join PFCC.Connect Today!

Interested in being part of PFCC.Connect but unsure of how to navigate it? Come join us for a free virtual tour of the community on Thursday, September 27th at 12 PM ET and learn all that it has to offer!
Register for the tour here

Institute for Patient- and Family-Centered Care
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