A Patient-Centered Complex Care Research Agenda
I am proud to announce PFCCpartners was recently a project partner on the development of the Patient-Centered Complex Care Research Agenda.
Hello everyone!
I am proud to announce PFCCpartners was recently a project partner on the development of the Patient-Centered Complex Care Research Agenda. PFCCpartners led the engagement activities for the project, and sincerely thank each of the patient and family caregivers who partnered on this project.
The Research Agenda outlines three core strategies and corresponding action steps to build a stronger, more coordinated, and patient-centered complex care evidence base.
1. Meaningfully Partner With Patients and Communities in Research
2. Focus on a Prioritized Set of Research Questions
3. Measure Outcomes in a More Consistent and Patient-Centered Way
I would like to personally invite you to review the Research Agenda and the recording of our September Community of Practice Workshop discussing its development.
Stephen Hoy
PFCCpartners, Chief Operations Officer
About the PFCCpartners and CHCS collaboration
"Nothing about us without us" became the motto during the monthly Patient Family Advisory Board (PFAB) planning and workgroup meetings. The group that worked on this project showed theory in action through active participation and listening, transparency, hard conversations and discussions that ended with meaningful resolutions. True collaboration was born was challenging questions and intense dialogue.
CHCS was committed to bringing and including the voices and what matters most of the lived experience experts. This can be seen in the research agenda recommendations, most pronounced with the measurement domain.
As the liaison on this project, it was refreshing to see every person involved have an "ah ha" growth moment.
Naomi Williams
Patient Family Engagement Specialist, PFCCpartners
A Patient-Centered Complex Care Research Agenda
"A guide to build the complex care evidence base by prioritizing what matters most to people with complex health and social needs."
ABOUT THE RESEARCH AGENDA
Success in complex care programs has traditionally been defined by reductions in health care costs or unnecessary utilization and not by what matters most to patients. There is much more for complex care to learn about which services work best for which groups of people and how it can best support patient goals.
Recognizing this need, the Center for Health Care Strategies (CHCS) developed the Patient-Centered Complex Care Research Agenda with funding from the Patient-Centered Outcomes Research Institute. The Research Agenda was co-created by more than 100 partners, including patients with lived expertise of complex care, researchers, providers, and health care system leaders.
ABOUT CHCS
The Center for Health Care Strategies (CHCS) is a policy design and implementation partner devoted to improving outcomes for people enrolled in Medicaid. We connect people and ideas to spark insights, build expertise, strengthen leadership, and spread innovations. CHCS works to improve health outcomes for the millions of people in the U.S. who face serious barriers to well-being, like poverty, complex health and social needs, and systemic racism.
Lessons Learned from Engaging People with Lived Experience to Inform Complex Care Research
Presented by:
Naomi Williams
Patient Family Engagement Specialist, PFCCpartners
RECORDED: Friday, September 30
Watch this month's PFCCpartners Community of Practice Workshop to learn about our recent collaboration with the Center for Health Care Strategies (CHCS). PFCCpartners supported the development of their Patient Family Advisory Board (PFAB) to be engaged throughout the development of the CHCS Research Agenda. The CHCS PFAB includes people with complex health care needs (including medical, mental health and/or substance use conditions) and social needs (e.g., housing, food access, and transportation).
PFCCpartners Readiness Tool
This tool is built on the successes and failures of hundreds of teams who have already begun engaging patient and family caregiver voices. Get ready to engage now – and bring this essential voice into your efforts to improve.
There are two main ingredients for successfully launching a patient/family partnership program: commitment and resource. But what resources are needed to get started? And what commitments are essential for authenticity, inclusivity, and constructive collaboration?
Whether your re-booting or starting a new partnership program - our newly released Readiness Tool will prepare your organization or team for impactful collaborations with your community members.
This tool is built on the successes and failures of hundreds of teams who have already begun engaging patient and family caregiver voices. Get ready to engage now – and bring this essential voice into your efforts to improve.
PFCCpartners Funfetti Recipe
Can we talk about cake? I mean, who doesn’t like cake? Cake can be beautiful, cake can be delicious, and cake can be both. Hopefully you never have to choose. And yet often, it seems more effort is put into decorating the cake than what’s going on inside.
Hello everyone,
Can we talk about cake? I mean, who doesn’t like cake? Cake can be beautiful, cake can be delicious, and cake can be both. Hopefully you never have to choose. And yet often, it seems more effort is put into decorating the cake than what’s going on inside.
I’m talking about cake today not to make you hungry, but as a metaphor for PFCCpartners’ vision to incorporate patient family partners into all levels of healthcare organizations. The last few years have seen a positive trend of healthcare organizations recognizing the need to incorporate individuals and communities, yet without doing so in a meaningful and pervasive way.
Our goal is to ensure that patient and family voices are not sprinkled onto a cake after it is baked. Rather, those voices should be baked throughout - to make a cake that tastes just as good as it looks. And what kind of cake do you know exactly what you’re going to find inside just by looking at it? A Funfetti cake, of course!
PFCCpartners’ “Funfetti” cake recipe for Patient Family Engagement:
Mix together:
1 c. - Convening a Diverse Community of Patient Family Partners
1 c. - Facilitating Inclusive Engagement and Equitable Decision Making
1 c. - Building Program/Organizational Leadership and Staff Engagement
Stir in the Sprinkles: Patients, Family Caregivers, and Community Members
• Engagement Support – Identify, prepare, and debrief with Advisors as they engage across different project activities.
• Community Building - Relationships within the community are nurtured with one-to-one coaching, an online peer community, and is directed by a Patient/Family Advisory Council.
• Skills Development – Elevate Advisor skills for their role and opportunity.
For further reading on incorporating community engagement into the heart of health and healthcare programs, policies, and outcomes, see the National Academy of Medicine article below.
Cheers!
Stephen Hoy
PFCCpartners, Chief Operations Officer