Although there are many different programs that care for people with complex health and social needs, there is little high-quality research evidence highlighting what aspects of complex care are most effective and for whom. Most research uses cost and utilization to assess complex care program success, yet this narrow lens ignores what matters most to patients in achieving their goals for quality of life and well-being.

Research must include patients — across the planning, design, implementation, and evaluation stages — to fully understand the impact and value of complex care. Recognizing this need, the Center for Health Care Strategies (CHCS) developed the Patient-Centered Complex Care Research Agenda. The Research Agenda, developed through support from the Patient-Centered Outcomes Research Institute (PCORI), provides a guide for collaboratively improving complex care with a priority on the experiences of people with complex needs. It was co-created by more than 100 stakeholders, including a Patient and Family Advisory Board.

This CHCS webinar, made possible by PCORI, highlighted the Research Agenda’s recommendations and opportunities for adopting a person-centered approach to complex care research. The webinar featured a panel discussion sharing insights from patient and health care partners who helped create the Research Agenda.

Agenda

I. Welcome and Introduction

Speaker: Rachel Davis, MPA, Consultant

R. Davis welcomed participants to the webinar. She described the need for a patient-centered research agenda and the process used to co-create the Research Agenda.

II. Patient-Centered Complex Care Research Agenda: Review of Recommendations

Speaker: R. Davis

R. Davis outlined the Research Agenda’s recommendations, detailing how these recommendations can impact future complex care research and the next steps for collective action in the field.

III. Panel Discussion

Anna Benyo, MPP, CHCS senior program officer, moderated the panel discussion featuring individuals who helped create the Research Agenda. Their conversation explored why it is essential to center patient voice in complex care research; how this research approach can impact complex care efforts; what resources are needed to carry out the Research Agenda’s recommendations; and opportunities for complex care programs and researchers to involve patient partners in future research efforts.

Panel:

• Alan Coker, Recovery Support Specialist (retired) and Patient and Family Advisory Board member
• Melissa Golpl, Patient and Family Advisory Board member 
• Amanda Johnson, MD, MBA, Assistant Vice President of Care Models, NYC Health + Hospitals
• Doris A. Maldonado Mendez, M.Ed, GAL, HIS, CCHW, YMHFA, National Latina Community Health Navigator and Patient and Family Advisory Board member  
• Cara Nikolajski, PhD, MPH, Director of Research Design and Implementation, UPMC Center for High-Value Health Care

IV. Concluding Remarks

A. Benyo concluded the webinar and provide closing remarks.

Research reported in this webinar is funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (20920). The views presented are solely the responsibility of the author and do not necessarily represent the views of PCORI, its Board of Governors or Methodology Committee.

PCORI is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.