• New Survey for Tracking Impact of COVID-19 on Family Presence and Role of PFACs

    Please take a moment to complete the survey.

    We invite all who are interested to complete the survey, particularly:

    • Hospital Administrators
    • Patient Care Unit Leaders (e.g., nurse manager, medical director, unit supervisor)
    • PFCC Coordinators/Directors
    • Patient/Family Advisory Council Members or other advisor roles

    IPFCC teamed up with UCSF Department of Family Health Care Nursing, School of Nursing and the University of Washington School of Nursing to develop a survey to gather information about changes to hospital and health system policies and practice due to COVID-19. The survey also explores how hospitals are engaging patient and family advisors in planning and implementing changes. Data (de-identified) from the survey will be reported on both IPFCC and PTBi websites so that results can be used by all to improve patient care as we continue our work to lessen the impact of COVID-19 on patients and families.

    Let’s all share and learn what’s happening in hospitals and work together with patients and families to promote partnership and best practices!

  • PFCC.Connect Conversation: PFCC and Pediatric Partnerships during COVID-19

    Join us on Tuesday, May 26th at noon ET for a special conversation. Funded by a grant from the Lucile Packard Foundation for Children's Health, Palo Alto, California, IPFCC will offer a series of free webinars and online conversations for children's hospitals and other pediatric settings focused on PFCC during COVID-19. In the first conversation in the series, we embark together to support dialogue, networking, and learning related to Pediatric Partnerships during COVID-19. The May 26th conversation hopes to bring together parent/family advisors and staff from children’s hospitals, and pediatric practices to discuss what is most important during the pandemic. We will use the time to identify key issues and prioritize them. Your participation will help inform webinars and future informal conversations and ,potentially, identify resource needs. What strengths do you see within the pediatric community? How have partnerships been enhanced or damaged during this time? How are children being impacted and where can partnerships address these concerns? Bring your best ideas and most perplexing issues so we can capture what is happening on the front lines and in our communities.

    The names and contact information of those who register for this conversation and other events in the series will be shared with the Lucile Packard Foundation.                                     

  • PFCC.Connect Conversation on Language 5-12 at Noon ET

    PFCC.Connect Continuing Conversation on COVID-19:

    Spotlight on Language and Messaging to Promote/Sustain Partnerships

    Tuesday, May 12th, noon ET/9amPT

  • PFAs - Join the Discussion on Elective Surgery Re-opening

    Are you a PFA? Want to get involved? Here is an Opportunity-

    Kelly Goodsen, a PFCC.Connect member is inviting you to consider joining this event. Participate in the audience and share your thoughts after the panel presentation....hope you can join:

    Connecting with Patients During COVID-19: A Panel Discussion
    Friday, May 1
    Noon ET, 11 am CT, 10 am MT, 9 am PT

    Vizient and Sg2 will host a panel discussion with patient and family advisors (PFAs) from its member hospitals and health systems on Friday, May 1. Nearly a dozen PFAs have agreed to join us to discuss the reopening of health care services such as elective surgeries and procedures. We also welcome any PFA from across the U.S. to join this discussion and participate in interactive polling questions and “chat” with us about this important topic.

    Register here:
  • Supporting Resiliency in Patients, Families, and Healthcare Staff

    Join Us on Tuesday, April 28th at Noon ET for a PFCC.Connect Conversation:

    In this third COVID-19 conversation, our topic will be RESILIENCY. As healthcare organizations and communities continue to maintain safety, and reduce the spread of this deadly virus, what impact have temporary policy changes and disruptions to our routines had on the people delivering care and those receiving care? What are you doing to take care of yourself, provide support to others, and be creative in nurturing strong partnerships? Come join us to share lessons learned, the tips and tools that strengthen our ability to maintain kindness and caring over the long term.

  • Continuing Conversation on COVID-19 - PFCC.Connect

    Join us Tuesday, April 14 at noon ET for a second conversation about the how best to keep our communities safe and reduce the spread of COVID-19 and invite the involvement of patients and families as members of the health care team. PFCC.Connect will be hosting a conversation to discuss and share what is happening out in the field.

    • What is your current approach to a caregiver’s role at the bedside?
    • How are you honoring patient wishes for family presence when their physical presence is not possible?
    • How are your PFAs staying connected to policy decisions and helping craft messages of respect and partnership to address this unprecedented time?
    Come join us to share how you have maintained safety, involved PFAs, and supported the emotional needs of patients, families and healthcare staff during this difficult time.

  • PFCC.Connect Conversation about COVID-19 3-31-2020

    PFCC.Connect will hold a conversation to support and learn from each other about PFCC approaches to preserve partnerships and connection during the COVID-19 pandemic.

    Register for the PFCC.Connect Informal Conversation on March 31 at noon ET:
  • PFCC Strategies in the Time of COVID-19 Webinar Added

    Due to strong demand, IPFCC will be holding a second webinar on Thursday, March 26, 2020 at 4pm ET:

    The capacity for participants is limited, so please register ASAP.
  • Suspicious Communication from Ellen Barney - Please delete without responding

    PFCC.Connect Learning Community:

    We became aware that someone going by the name Ellen Barney joined the listserv in the last two days and is asking individuals to contact her via a gmail account. The message and its the timing was very suspicious and some of you have contacted us. We have deactivated this account and will continue to monitor activity of this nature.

    Apparently, there is an upswing right now in suspicious communications like this globally. Thank you all for helping us keep PFCC.Connect a credible and collaborative resource.

    Take care and continue to stay connected while maintaining physical distancing during this unprecedented time. Be safe and well!
  • Call for Nominations: CMS Technical Expert Panels - Patient Family Opportunity

    Notice from CMS:
    "The Centers for Medicare & Medicaid Services (CMS) is developing quality measures for certain Medicare beneficiaries. As part of this project, Yale New Haven Health Services Corporation - Center for Outcomes Research and Evaluation (CORE) is currently convening two Technical Expert Panels (TEPs).

    We invite you to nominate individuals who might be interested in participating. The goal is to have broad representation on each panel to encompass the perspectives of healthcare providers, quality improvement professionals, performance measurement experts, purchasers, consumers, and patients. Please see below for an overview of the TEPs accepting nominations. You can nominate others or yourself.

    TEP Objective Beneficiary Population Panel Duration Deadline for Nominations
    Development of Days at Home Quality Measure Patients who are aged 18 years or older* with complex, chronic conditions Through September 2020 January 9, 2020
    5:00 pm ET
    Development of a Quality Measure Assessing Delay in Progression of Chronic Kidney Disease (CKD) Patients who are aged 18 years or older with CKD stages 4 and 5 Through September 2020 and potentially 2021 January 13, 2020
    5:00 pm ET

    Individuals and organizations should be aware that persons selected for the TEP represent themselves and not their organizations. Instructions for submitting a nomination packet, as well as work and TEP member responsibilities can be found on the link below".
  • New York Times Request re: Hospital Provided Childcare for Families

    IPFCC was contacted by Jancee Dunn, a reporter writing an article for the NY Times. She is working on an article regarding childcare support provided by hospitals to parents admitted with sudden illness or in emergencies.
    She is interested in talking with hospitals who provide this service or parents who have had this experience. Her article deadline is by December 30th.

    If you information on this topic, please contact her directly at

    Thank you!
  • Free Webinar for Patients and Caregivers Opportunity

    Patients and Caregivers: Learn how you can transform care in your community

  • Abstract Submission Deadline has been extended to December 11th!

    We have extended the submission deadline for abstract to our 9th International Conference in Nashville! Don't miss out!
  • Submit an Abstract for the IPFCC 9th International Conference

    It’s now official:IPFCC's  9th International Conference on Patient- and Family-Centered Care: Partnerships for Quality, Safety, and Equity in Nashville, TN is happening. With leadership support from Vanderbilt University Medical Center and partnership support from Beaumont Health, the conference will be held from August 18 to 20th, 2020.

    Our conferences are such exciting events and we look forward to seeing you there! 

    Given your passion for PFCC and authentic partnerships between health care organizations and patient and family advisors, please consider submitting an abstract about your work at is accepting submissions for both oral and poster presentations now.  December 4, 2019 is the abstract closing date.
    I have attached the Call for Abstracts brochure; you can also find more information on our website: Please feel free to share this information with your

  • PFAs - Another opportunity to provide virtual feedback...on electronic health records...

    You Do Not Need to Be an EPIC User to Participate (a type of electronic medical record) 

    An Opportunity to Shape the Future of Healthcare!

    Epic’s Patient Experience team builds software that millions of patients use to manage their health. Their team is always striving to make the software better and would love to hear from you!


    If you would like to be contacted about potential research studies or opportunities to give feedback on new features, please fill out this 5-10 minute online survey. Studies may be done remotely or on Epic’s campus in Madison, WI. If you’re able to come to Epic, they will provide you with a lunch and a tour of their campus!


    For questions, please email


  • Patient Family Advisor (PFA) Summit on Healthcare Measurement January 28, 2020 National Quality Foru

    PFA Scholarships are available!

    The PFA Summit on Healthcare Measurement will facilitate actionable dialogue between researchers, measure developers, policy organizations, clinical experts, patients and family caregivers. This co-design opportunity will focus on strengthening approaches to engage the patient and family perspective in developing and using healthcare measures. Bridging technical wisdom and lived experiences will ensure that we move toward measures that are more meaningful. You can expect to learn from progressive work being done currently, and to collaborate with experts around problem-solving existing barriers to engagement. Patient family advisors participate by application and national partners by invitation in the coming weeks.

    Meeting Objectives

    1. To increase the capacity of Patient Family Advisors to participate in all stages of measurement development.
    2. To increase the capacity of measurement professionals to meaningfully produce and report quality data to PFAnetwork Members as representatives of the broader consumer voice.
    3. To identify future opportunities for partnership to strengthen the all phases of measure development.
  • Seeking information about use of health information technology impacting patients and families

    Important changes will be happening in the field of health information technology in the near future that will have a direct impact on patients and families.


    IPFCC is interested to know if your hospital or health system has:

    • A PFAC (or PFAC subcommittee) focused on HIT (Health Information Technology)?
    • PFA Members on the HIT Committee?
    • A FHIR (Fast Healthcare Interoperability Resource) Implementation Committee or a PFAC focused on FHIR Implementation?
    • (FHIR is the software platform that will be used to solve the interoperability between electronic health records and create an application programming interface (API) between different electronic health records. APIs will also be used to create disease specific apps for patients and families.)
    • PFAs on the OpenNotes Implementation Team?
    • If there is no HIT PFAC or subcommittee, has the existing PFAC has done focused work on HIT issues in partnership with the health system?


  • Ontario Health Team (Canada) Seeking Patient, Family, Community Participation in Healthcare Redesign

    Do you live within the  Markham, Stouffville, Brock, Uxbridge and Thornhill regions of Ontario, Canada? Please consider participating in imaging how to improve healthcare services where you live. Share your experience and ideas. View the flyer in the library and RSVP by August 9th by contacting Sharon Kenny at or (905) 472-7373 ext. 7091.
  • August Informal Conversation + Updates

    Most of our previous informal conversation recordings have been posted in the All Members Library under "Previous Conversation Recordings." I have also added a shortcut on the homepage, for your convenience.

    For those who registered to receive the recordings by email, I apologize for the delay. I will try and send all of those out to you by the end of this month/beginning of next month.

    Registration is now open for our August conversation on Measurement - Tracking Patient and Family Engagement Activity and Outcomes. You can register for it here. It is also posted on the Events calendar.
  • Upcoming PFCC.Connect Conversations - Watch for Registration Links in your email.

    Mark your calendars now for 2 upcoming PFCC.Connect Informal Conversations:

    • July 18 1pmET/10amPT  Topic: Behavioral Health - Engaging Patients and Families
    There is a growing interest in addressing mental health, substance use disorder and other behavioral health challenges across the continuum. Innovative partnership models are being explored and are showing some promising results. There is a growing recognition that inviting, supporting, and encouraging participation of those with a lived experience is an important aspect of these efforts. How have you engaged individuals and their families in these efforts? What creative solutions are being explored in your organization, community or region? When have patients and families added a unique perspective and helped build coalitions and solutions? How have direct care strategies helped strengthen engagement of those receiving care? Come join a conversation that will explore these issues and uncover the best practices that you and your colleagues/partners have discovered. 
    • August 1 2pmET/11amPT  Topic:  Measurement: Tracking Patient and Family Engagement Activities and Outcomes
    Many organizations have engaged patients and families in direct care and as improvement partners. To build an evidence base for these partnerships and the advancement of PFCC, developing a measurement strategy is essential. What has your organization found to be most useful? How has your PFAC and PFAs contributed or been involved in measuring change and improvement? Do you use Annual Reports to document results? When and where are results shared and with whom? Are there topics or areas that you have found challenging to measure? What advice might you give an organization just starting out in this journey about the significance and impact of documenting the power of partnerships? Please join the conversation and share your successes and challenges with your peers as we delve into this important topic.