IPFCC provides national and international leadership for advancing the practice of patient- and family-centered care. By promoting collaborative, empowering partnerships among patients, families, and health care professionals, IPFCC facilitates patient- and family-centered change in all health care settings.
Listed below are selected current and recent initiatives that IPFCC lead.
Learning from Experience: Exploring the Impact of Approaches to Family Presence in Hospitals During COVID-19
During the COVID-19 pandemic, healthcare systems implemented changes to family presence policies to control infection. Families were not allowed to be present with their hospitalized family member. Changes were made without patient and family input. Emerging data highlight the harms of restrictions to patients, families, and clinicians, but this topic has not been studied through research. This project, funded by a Eugene Washington PCORI Engagement Award, will engage key stakeholders to learn from their experiences about the impact of different approaches to family presence. Potential research questions important to patients and families, especially those disproportionately affected by COVID-19, will be elicited and prioritized to inform future research.
Building Capacity for Long-Term Care Stakeholders in COVID-Related PCOR/CER
To control COVID-19 in long-term care settings, lockdowns were imposed, preventing residents from seeing family and friends in person and leading to increased social isolation and loneliness. Future patient-centered outcomes research/comparative effectiveness research (PCOR/CER) should address issues by testing and disseminating interventions that focus on social isolation and loneliness. With funding support from a Eugene Washington PCORI Engagement Award, IPFCC will build capacity for residents, families, leaders, and staff in four long-term care settings; researchers; and other stakeholders to partner by: (a) developing better understanding of social isolation and loneliness related to COVID-19; (b) modeling a program to build effective partnerships in long-term care; and (c) activating a network of stakeholders to facilitate future collaboration for PCOR/CER.
Supporting PFCC Practices and Strategies in the Time of COVID-19
With support from the NYS Health Foundation, IPFCC launched the project, "Supporting PFCC Practices and Strategies in the Time of COVID-19”. The project serves as a resource and clearinghouse for up-to-date, easily accessible, information about ways to stay grounded in PFCC core concepts during COVID-19, while also prioritizing safety. Key activities of the project include scanning the field for best practices, strategies, emerging concerns/issues, and examples of partnerships with patient, resident, and family advisors; developing guidance tools to enhance/strengthen partnerships; promoting virtual sharing and problem solving through hosting Informal Conversations on PFCC.Connect, and disseminating information, emerging best practices, and resources.
Engaging Underserved Urban Communities in Research: Addressing Challenges in the Context of COVID-19
IPFCC received Eugene Washington PCORI Engagement Award funding for the project, Engaging Underserved Urban Communities in Research: Addressing Challenges in the Context of COVID-19. IPFCC is partnering in this project with Smart from the Start, a family support and community engagement organization working with underserved communities in Boston and Washington, DC. This project is designed to identify challenges to engaging urban, underserved populations in research during COVID-19; develop guidance for creating meaningful partnerships between researchers and underserved communities that address accommodations needed due to COVID-19; and develop the capacity of leaders from these communities to partner in planning, conducting, and disseminating research.
Engaging the Expertise of Patients and Families in the Education of a New Generation of Providers
With support from the New York State Health Foundation, IPFCC is leading this project to develop, test, and disseminate resources for establishing or expanding patient and family faculty programs within academic medical centers (AMCs). This project is intended to address the lack of robust patient and family faculty programs in AMCs by developing, testing, and disseminating training resources and implementation guidance for establishing or expanding a patient and family faculty program. IPFCC is providing online education modules and training to five New York AMCs.
A National Study of Patient and Family Advisory Councils (PFACs) in U.S. Children’s Hospitals
With support from the Lucile Packard Foundation for Children’s Health, IPFCC is conducting a study of PFACs and other patient/family advisor roles in children’s hospitals. IPFCC is partnering with the Children’s Hospital Association and Cincinnati Children’s Hospital. The project’s purpose is to identify the prevalence of PFACs in U.S. children’s hospitals and collect information about their structure and functioning, including during the COVID-19 pandemic. This work builds on a previous study conducted by IPFCC about PFACs in NY hospitals. Based on the findings from a national survey and interviews, IPFCC will develop and disseminate policy and practice recommendations.
IPFCC launched Better Together: Partnering with Families, in June 2014. IPFCC has multiple Better Together Partners, including American Society for Healthcare Risk Management, American Association of Critical-Care Nurses, National Partnership for Women & Families, The Canadian Foundation for Healthcare Improvement, New Yorkers for Patient and Family Empowerment, Health in Aging Foundation, and The DAISY Foundation.
As part of this initiative, supporting family presence and participation in hospitals, IPFCC has provided training and follow-up coaching to a number of NYC hospitals, including six public hospitals. The results of this work were summarized in the report, Sick, Scared, and Separated from Loved Ones, published by NYPIRG in 2018. Through separate funding from the New York State Health Foundation, the Better Together initiative was also extended to hospitals throughout New York State for 2017-2019.
Learn more about this campaign in the Better Together website section, which includes information on exemplar hospitals, and a toolkit and other resources to assist organizations to make this change. Learn more...
Listed below are selected current and recent initiatives in which IPFCC assists others through consulting, training and technical assistance, and coaching.
Update of the Patient-Centered Outcomes Research Institute (PCORI) Engagement Rubric
IPFCC is serving as a subcontractor to the American Institutes for Research (AIR) to assist in the development of an updated Engagement Rubric for PCORI. It is intended that the Rubric will offer guidance for implementing evidence-based engagement practices, facilitate sustainable and equitable partnerships among researchers and stakeholders, and share new lessons learned. The Rubric will be updated using knowledge obtained through a literature search, stakeholder interviews and focus groups, and a multi-stakeholder convening. IPFCC staff is participating in all activities. Ultimately, the updated Rubric will be used to guide PCORI research and engagement projects and the broader field of stakeholder-driven research as well as advance the science of engagement
National Academy of Medicine Action Collaborative on Countering the U.S Opioid Epidemic and its Education and Training Workgroup
IPFCC is represented as a full member of the National Academy of Medicine’s (NAM) Action Collaborative on Countering the U.S. Opioid Epidemic and the workgroup focusing specifically gaps in professional and interprofessional education and strategies to improve pain management and opioid use disorder education. IPFCC has been asked to present for a NAM convening on issues related to health inequities and strategies to reduce them.
Improving Care for Patients with Serious Illness
With funding from the Patient-Centered Outcomes Research Institute (PCORI®), Oregon Health & Science University, in collaboration with six other institutions in the US and Canada (the Meta-LARC consortium), is exploring team-based vs. clinician-focused models for advance care planning in primary care. Beginning in fall 2017, IPFCC is serving in a leadership role for the patient engagement component for this 5-year, multi-site research project. Engagement of Patient and Family Advisors is occurring at all levels of the project from the Research Practice Partnership team guiding the study to the individual clinics that are participating.
Maternal and Child Health Measurement Research Network
IPFCC is engaged as a subcontractor to Rutgers, the State University, in this three-year project funded by the Health Resources and Services Administration. IPFCC staff serve as members of the Executive Steering Committee, Senior Advisory Committee, and several Technical Working Groups. IPFCC’s work includes supporting the involvement of a family leader to participate in the Executive Steering Committee and Technical Working Groups; participate in the development, prioritization, and review of measures; and assist in dissemination activities.
Ronald McDonald House Charities
Funded by Ronald McDonald House Charities (RHMC) and some of its chapters, IPFCC provides training and technical assistance to advance the practice of family-centered care in both developed and developing countries and supporting RMHC’s mission of “keeping families close.” IPFCC leadership has provided in-person and virtual presentations in Canada, the Netherlands, and Ukraine and is assisting with the planning of some of RMHC’s global virtual educational programming.
Vermont Oxford Network
Since 2018, IPFCC has been serving as Expert Faculty and Consultant for the Vermont Oxford Network Newborn Improvement Collaboratives for Quality. New collaboratives have begun in 2021 and are centered on critical transitions across the care continuum starting before admission and through transition to home. Modeling authentic partnerships, family partners are integrated in every team, as faculty in each topical homeroom, and as lead faculty for the collaboratives. IPFCC provides education, resources, and coaching for the collaboratives.
Supporting the Depression and Bipolar Support Alliance Transforming Wellness Initiative
Since 2019, IPFCC has provided research support and technical assistance for the Depression and Bipolar Support Alliance (DBSA)’s Transforming Wellness Initiative, a multi-year initiative to transform the definition of wellness for individuals living with mood disorders. IPFCC’s work has included conducting focus groups with individuals with lived experience of depression and bipolar, supporting DBSA in the development of a peer and family advisory council, and developing educational materials to support continued peer and family engagement in the transforming wellness work.
Recovering Patients Informing Research about COVID-19 (REPAIR COVID)
IPFCC is providing support to a team from the Johns Hopkins University for a PCORI-funded project titled, “Engagement in Pandemic Times: Partnering with Patients and Caregivers Affected by COVID-19 to Advance Patient-Centered Outcomes Research.” This project is intended to facilitate the incorporation of patient, family caregiver, and clinician perspectives in developing a research agenda for addressing the impact of COVID-19. IPFCC staff are supporting the effort to surface and understand key questions and concerns by moderating virtual conversations with patients and families who have been directly affected by COVID-19.
Transforming Cardiovascular Care in Our Communities
IPFCC is serving as the Patient and Family Engagement Subject Matter Expert to the Center for Care Innovations NCAL Kaiser Permanente-funded cardiovascular disease program with an emphasis on reducing health disparities. As part of this technical assistance, a training video was produced to prepare clinic teams to conduct patient and family interviews to better understand the perspective of individuals from diverse populations. Follow-up coaching support was a key component to ensure the voice of patients helped inform the practice changes made to address identified health disparities.
PacificSource Health Plan
IPFCC conducted a brief needs assessment of clinics served by PacificSource Health Plan and developed an interactive series of workshops on Patient and Family Engagement and Shared Decision Making. This training was initially developed for an in-person interactive format and was modified to address the need to provide an environment for remote learning during COVID. In addition to the workshops, coaching support was offered to the attendees to support their implementation of strategies offered in the training.