Announcements

  • Patient & Caregiver Input Opportunity

    Testing the What Matters to Me Workbook

    Dr. Erik Fromme, Ariadne Labs faculty, and Palliative Care Physician at Dana Farber Cancer Institute, is recruiting a diverse group of patients and caregivers to test their new What Matters to Me Workbook. (https://theconversationproject.org/new-workbook-what-matters-to-me/) They are looking for adults (18+) who are living with a serious illness and have a caregiver (family member, friend, health care proxy) interested in participating with them. If they do not have someone like that, but would be willing to try having a conversation with one of their health professionals (doctor, social worker, nurse, etc.), that is also acceptable.

    If you know of a patient who might be eligible and interested per the study criteria, please reach out to Nora at seriousillnesscare@ariadnelabs.org for more information.
  • Webinar April 15th: CARE_PATH for Kids

    CARE_PATH for Kids: A Family-Centered Approach to Shared Plans of Care for Children with Special Health Care Needs
    April 15, 2021, 11 am to 12 pm PST

    Learn more and register: https://www.lpfch.org/cshcn/join-us/events/carepath-kids-family-centered-approach-shared-plans-care-children-special
  • “Where Do We Go From Here?” Tuesday, April 6th, noon ET

    This is the 8th and final conversation in a series funded by a grant from the New York State Health Foundation. As you look back on living with COVID-19 for over a year, what insights have you gained? Were there high points in the year you wish to share and celebrate? It has been challenging and stressful for many of us. What have you or others done to strengthen individual and organizational resilience? What support and information in sustaining effective partnerships are still needed? How can we continue to learn together and support the core concepts of patient- and family-centered care?
     
    Join us to identify ways that the PFCC.Connect learning community can continue to advance PFCC now and post-pandemic. These informal conversations are participatory in nature, building on the experience and strengths of those who join the call. The discussion is guided by what participants want to learn more about and through sharing our collective experiences.
     
  • A COVID Year in Review: What We’ve Learned About Partnerships Across the Continuum Thursday, Mar 11,

    This last year has been unlike any other as the pandemic has taken its toll across the globe. Despite the challenges, many healthcare organizations have renewed their commitment to patient- and family-centered care. Join this webinar to review the power of partnerships and how patient and family advisors have stayed connected to help promote safety, quality and resiliency. Emerging best practices and new tools will be shared, including IPFCC’s resource, “Family Presence During A Pandemic: Guidance for Decision-Making.”

    This free webinar is made possible by the support of the New York State Health Foundation.

     

    Webinar Objectives:

    • Explore ways that organizations have strengthened partnerships with patient, resident, and family advisors (PFAs) in the midst of a pandemic;
    • Learn how PFAs have influenced policy, programs, and services to help address the challenges of COVID to improve safety and quality;
    • Review three new tools for “revisiting” recent restrictions on family presence in health care settings and learn how to use them with a collaborative decision-making team, including patient and family advisors;
    • Reflect on the partnership lessons learned in the last year and identify emerging best practices that move us forward together to ensure a safe, equitable, and bright future for all

     

  • Free Webinar on OpenNotes in Pediarics and With Adolescentss

    OpenNotes is hosting a free webinar on OpenNotes in Pediatrics and with Adolescents. The webinar is Feb. 18, 12-1pm EST. A companion office hours session, which is Q&A only, will take place on Feb. 23, 12-1pm EST. The expert presenters for these sessions are Dr. Fabienne Bourgeois from Boston Children's Hospital and Dr. Cynthia Kuelbs from Rady Children's Hospital.

    More information and registration can be found here: https://www.opennotes.org/news/open-notes-in-pediatrics-with-adolescents-research-real-world-experience/
  • Mark Your Calendars - Final Free COVID Webinar on Best Practices

    Webinar on March 11th noon ET: A COVID Year in Review: What We’ve Learned About Partnerships Across the Continuum
  • Upcoming PFCC.Connect Informal Conversation

    PFCC.Connect Conversation February 9th Noon ET: The Evolution of Patient and Family Advisory Councils During the Time of COVID
  • New COVID Webinar Recording- Behavioral Health Available

    Addressing Behavioral Health Needs in the Time of COVID: Building Partnerships and Resiliency (January 21, 2021)

  • PFCC.Connect Conversation on December 15th

    Join us for a PFCC.Connect Continuing Conversation on COVID-19: PFCC Partnerships: Continuing Care Communities – Best Practice for Supporting Elders to Thrive in the time of COVID


  • Webinar Recording on COVID and Long Term Care Now Available

    Learn how others have responded to COVID challenges in Long Term Care by accessing all the materials from the webinar.
  • PFCC Partnerships: Ambulatory Surgery Amid COVID – Best Practices for Safety and Care

    Join us on Tuesday, October 27th at noon ET for informal conversation.
  • Call for Nominations for NQF Committees - Due November 2, 2020

    National Quality Forum is soliciting nominations for their committees. NQF is also seeking patient and caregiver representatives to serve on the 13 different committees. The committee including patient experience, surgery, and patient safety to name a few. Individuals can self-nominate or nominate someone they know.

    They are looking for diversity and a commitment for a 2 year term.
  • Engagement in pandemic times: Partnering with patients and caregivers affected by COVID-19

    IPFCC is a partner to Johns Hopkins University on their PCORI Engagement Award titled “Engagement in pandemic times: Partnering with patients and caregivers affected by COVID-19 to advance patient-centered outcomes research." Johns Hopkins is looking to partner with people who had COVID-19 and who have an underlying medical condition (e.g., high blood pressure, diabetes, chronic lung disease), as well as their family caregivers. Interested participants will be invited to join 1-2 conversations, either online or by phone, to share their experiences and thoughts about COVID-19. An honorarium of $50 would be provided. If you would like to learn more information about participating in this study, please contact Jamia Saunders by phone at 410‐637‐4389 or by email at REPAIRCOVID19@jhu.edu.

  • Upcoming PFCC.Connect Informal Conversation 10-13 noon ET

    PFCC Partnerships: Focusing on Vulnerable Populations in the Pandemic: Challenges, Strengths, and Effective Strategies

    Tuesday, October 13th, noon ET/9amPT

    This is the third conversation in a series that is funded by a grant from the New York State Health Foundation. In this conversation, we will discuss and explore the ways vulnerable populations are being impacted by COVID and the ways that organizations and communities are working to address inequities. How are individuals and families from minority communities being engaged and providing feedback on their experience? With the ramp-up of virtual care via telehealth, how is the digital divide being addressed so that no one is left behind? As you have encountered challenges, how have you built on the strengths of your community and addressed these issues?

    What strategies have you implemented to increase trust among the hardest-to-reach patients and families? What hopeful stories of partnership might you share with the group?

    Please join us!

     

  • Pediatric Partnerships Informal Conversation 9-29 Noon ET

    PFCC and Pediatric Partnerships During COVID-19 – Finding Strength in Crisis

    Tuesday, September, noon ET/9amPT

    Join Us for the 5th Event in the Series: PFCC and Pediatric Partnerships During COVID-19

     

  • Family Presence and Partnership: Promising Practices in Hospital Settings During COVID-19

    When the COVID-19 pandemic threatened the welfare and safety of patients, health care providers and the community, hospitals suspended established family presence and visitation policies. The partnerships with patient and family advisors was challenged as well. This webinar highlights the ways that organizations committed to authentic partnerships have co-created solutions to address safety and facilitate family presence. Practical ideas, strategies and resources will be shared. This free webinar is supported by the New York State Health Foundation.

    Join us on Tuesday, September 15th at noon ET
  • PFCC.Connect Conversation August 10th!

    Join us for another PFCC.Connect Continuing Conversation on COVID-19:

    PFCC Partnerships: Addressing Isolation and Emotional Well-being during the Pandemic

    Monday, August 10th, noon ET/9amPT



  • Partial Scholarships Available for Tuition Assistance to International Conference

    Interested in attending IPFCC’s 9th International Conference on Patient- and Family-Centered Care: Partnerships for Quality, Safety, and Equity but not yet registered due to cost considerations?

    A generous donor has helped IPFCC create a Matching Conference Scholarship Fund which will cover 50% of the registration fee. That means that health care professionals can register for $250 and patient and family advisors/partners can register for $200!
  • Scholarships to IPFCC International Conference for NY state residents

    Through the generous support of the New York State Health Foundation, we have a limited number of scholarships to cover the tuition/registration costs for IPFCC's 9th International Conference on Patient- and Family-Centered Care.

    If you are a NY state resident and interested, please apply today!

  • Free Pre-Conference Webinar on Telehealth July 30th at noon

    Join us for a free webinar next week:

    Creating Your Telehealth Platform Hand in Hand with Patients: The Cambridge Health Alliance Story
  • Free Pre-Conferece Webinar: Conversation on the Opioid Epidemic July 21st 12-1pmET

    A Conversation About the Opioid Epidemic and
    Current Approaches to Address This Crisis

    We are excited to give you a preview of what to expect from the virtual Conference and are hosting a free pre-Conference webinar on July 21st.

     Hear from Sam Quinones, award winning journalist and author of Dreamland: The True Tale of America’s Opiate Epidemic, and Liz Crocker, lead author of Privileged Presence: Personal Stories of Connections in Health Care and author of Transforming Memories: Sharing Spontaneous Writing Using Loaded Words, as they engage in a conversation about the roots of the opiate epidemic, how it’s changed over time, where it stands now, what it’s calling on us to do, and its connections to both the coronavirus and Black Lives Matter movement.
  • PFCC Partnerships Across the Continuum during COVID-19: Where Are We Now? Thursday, July 16th, noon

    IPFCC has hosted numerous informal conversations on COVID-19 impact on patient- and family-centered care (PFCC). We want to take this conversation to a deeper level and need your assistance.

     

    Funded by a grant from the New York State Health Foundation, IPFCC will offer a series of free webinars and online conversations across the continuum of care focused on PFCC during COVID-19. 
    In this next conversation, we will step back and review where we’ve been and what lies ahead. We want to support an ongoing dialogue, networking, and learning related to PFCC and bring in voices from other care settings. The July 16th conversation hopes to bring together individuals across the care continuum to discuss what is most important at this time. We will use the time to identify key issues and prioritize them. Your participation will help inform webinars, future informal conversations, and potentially identify resource needs. What strengths do you see across the community? How have partnerships been enhanced or damaged during the time? How are individuals being impacted by COVID-19 policies and practices and where can partnerships address these concerns? What are the burning issues in primary care and ambulatory settings as well as in continuing care retirement communities (CCRC). Bring your best ideas and most perplexing issues so we can capture what is happening out on the front lines and in our communities. We invite you to bring others in your network so that we have a broad representation.

    These informal conversations are participatory in nature, building on the experience and strengths of those who join the call. We do not do a presentation but rather let the discussion be guided by what the participants want to learn more about through the sharing of our collective experiences. Come join the conversation to help us frame the conversation and development of resources and webinars as part of the ongoing project. Mary Minniti, Senior Policy and Program Specialist, will facilitate this discussion.

  • Opportunity for PFAs to Share Your Thoughts

    A colleague from Vizient, Kellie Goodson, is seeking patient and family voices to participate in an ongoing conversation (virtual) on reopening. Interested? Read more below:

    Vizient and Sg2 would like to continue to bring the voices of patients and families to its member health care organizations to help navigate the reopening of health care services such as elective surgeries and procedures during the COVID-19 pandemic. They welcome Patient and Family Advisors from across the U.S. to provide feedback via a pulse survey (short 12 questions survey that should only take 5 minutes to complete). They would like to get as much feedback as possible by July 7th, so please pass this survey along to any patient or family care giver in your network. Vizient will create a report and make it publically available to its members and to patients and families who complete the survey.
  • Culture and Inclusiveness Action Collaborative Free Webinar July 7th 1-4pm ET

    Culture and Inclusiveness
    Action Collaborative
    Free Webinar
    July 7, 2020 | 1:00pm - 4:00pm ET


    Join the National Academy of Medicine's Leadership Consortium for a free webinar on July 7, 2020 at 1pm ET that will explore opportunities to engage patients and families in care settings during the pandemic and system- and policy-level approaches to improve health and health care equity.

    Speakers will deliver short presentations and the webinar will conclude with Q&A with the audience. No continuing education credits will be issued for attending this webinar, and the webinar will be recorded and posted on the NAM's website after the webinar concludes.

    Webinar Agenda
    1:00 pm ET | Welcome, Introductions, and Meeting Overview

    Michael McGinnis, National Academy of Medicine
    Mary D. Naylor, University of Pennsylvania
    Bill Novelli, Georgetown University
    Sandra Hernandez, California Health Care Foundation
    1:15 pm | Patient and Family Engagement During COVID-19

    This session will explore opportunities to engage patients and families in care settings during the pandemic. The discussion will focus on identifying solutions to the continued and existing gaps on engagement that are especially critical to address at this time.

    Beverley Johnson, Institute for Patient and Family-Centered Care
    Knitasha Washington, ATW Health Solutions
    2:00 pm | System and Policy-Level Strategies to Address Health and Health care Equity

    Strategies to reduce disparities and improve equity have ranged from focusing on social determinants of health, to tailoring interventions to populations at risk for disparities, to implementing policies specifically designed to reduce disparate outcomes. In this session, presentations will explore system- and policy-level approaches to improve health and healthcare equity. The discussion will focus on short- and long-term opportunities to leverage the unique position of the Leadership Consortium, and the NAM more broadly, to scale and spread these approaches to systematically advance equity.

    Tekisha Everette, Health Equity Solutions
    Consuelo H. Wilkins, Vanderbilt University Medical Center
    Cara James, Grantmakers in Health
    3:15 pm ET | Q & A

    A brief opportunity for webinar participants to ask additional questions that were not covered in the previous presentations and discussions.

    3:45 pm ET | Reflections, Next Steps, and Closing Remarks

    A brief summary of the afternoon’s discussion will be provided, as well as final thanks to all invited speakers and participants.

    Sandra Hernandez, California Health Care Foundation
    Michael McGinnis, National Academy of Medicine
    4:00 pm | Adjourn
    Register to Attend





  • PFCC.Connect Conversation on Black Lives Matter in Health Care

    IPFCC is hosting a PFCC.Connect Conversation on June 30th, Tuesday at noon ET, we hope you will join us to discuss this important topic:
    Building and Expanding Authentic Partnerships for Transforming Healthcare: Addressing Health Disparities Because Black Lives Matter

    In the health care space, how can we ensure that the PFCC values of respect and dignity, affirmative information sharing, participation, and collaboration are not just words but characterize experiences of the Black community?

    We encourage you to bring your stories as well as examples of positive, impactful approaches used to change systems of care. Come join us to share your lessons learned and ideas for positive action to address health care disparities now and in the future.

  • Next COVID-10 Conversation June 9th noon ET

    Our next PFCC.Connect virtual informal conversation will be held next Tuesday, June 9, 2020 at 12:00 PM ET/9:00 AM PT, a continuing conversation on COVID-19: Connecting to the Community as Healthcare Services Begin to Resume.

    In the midst of COVID-19, hospitals are preparing to resume surgeries and other outpatient services; primary care is ramping up. Will our communities be ready? How is your organization inviting patients and families to come back in and re-establish care? Given that the pandemic has had a disproportionate negative impact on people of color, what ways are you reaching out to that population to ensure your organization is a trusted partner? Because of widespread unemployment, many more individuals/families are experiencing food and housing insecurity that may be prioritized over getting needed health care services. How have you partnered with your PFACs and community organizations to remove barriers to essential needs/services? How are the voices of patients and families who have experienced COVID-19’s impacts being integrated into Lessons Learned so far? Come join us to share what you have found most helpful, the strategies you have implemented as well as any challenges you face.
  • 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.