REGAIN: Roadmap for Evaluating Goals in Advanced Illness Navigation (2020-2021)
Patients who are facing a serious illness must make numerous complex healthcare decisions that will determine what treatment they receive, what their quality of life will be and how long they will survive. Too often, patients and their families must make these decisions without adequate communication about their hopes, fears, values and goals. The result is that many patients receive more treatment than they would like, or treatment that is intended to prolong survival when their goals are really to maximize comfort and preserve quality of life.
Launched in 2017, REGAIN is a collaboration between Duke Health (including the School of Medicine and the School of Nursing) and Duke University. The overarching aim of REGAIN is to implement a roadmap for goals of care conversations for Duke Health patients who have serious illnesses. Led by the Duke Center for Palliative Care and supported by the health system and academic partners, REGAIN will be Duke Health’s strategy for ensuring that all patients have access to open, accurate and empathetic communication about their goals for care.
This project team wrestled with a series of conceptual and strategic questionsmeant to guide Duke Health’s efforts to improve communication for all patients, such as:
- What does good communication look like?
- Where are the needs for communication greatest?
- What are the barriers to communication in a busy clinical setting?
- Can advances in communication improve health-related outcomes such as quality of life, healthcare utilization and survival?
Team members pursued a series of faculty-mentored projects that yielded new datasets, papers for publication and preliminary data and analysis for a grant proposal. Projects included:
- Evaluating the Usability of YouTube as a Source of Information on Hospice: A Systematic Review
- The Align Framework: A Parent-informed Approach to Prognostic Communication in the Neonatal Intensive Care Unit
- Meeting of the Minds: Discussion of Brain Imaging for Critically Ill Infants
- Comparing Palliative Care Knowledge in Metropolitan and Non-metropolitan Areas of the United States
- Evaluating Quality, Comprehensiveness and Understandability of Hospice Education Resources on YouTube
Fall 2020 – Spring 2021
Improving Pediatric Care through Human-centered Design (2021 Fortin Foundation Bass Connections Virtual Showcase)
Evaluating the Usability of YouTube as a Source of Information on Hospice: A Systematic Review (poster by Ezra Kalmowitz, Erik Tran, Mihir Patel, Sarabesh Natarajan, Simran Prakash, Kaylianna Ritz and Arif Kamal)
The Align Framework: A Parent-informed Approach to Prognostic Communication in the Neonatal Intensive Care Unit (poster by Simran Bansal, Mary Carol Barks, Debra Brandon, Kathryn Pollak, Hannah Glass, Peter Ubel and Monica Lemmon)
Meeting of the Minds: Discussion of Brain Imaging for Critically Ill Infants (poster by Madison Canfora, Mary C. Barks, Margaret H. Bost, Sarah Bernstein and Monica E. Lemmon)
Comparing Palliative Care Knowledge in Metropolitan and Non-metropolitan Areas of the United States (poster by Erica Langan, Arif Kamal, Katherine Miller and Brystana Kaufman)
Evaluating Quality, Comprehensiveness and Understandability of Hospice Education Resources on YouTube (poster by Erik Tran, Ezra Kalmowitz, Sarabesh Natarajan, Mihir Patel, Simran Prakash, Kaylianna Ritz and Arif Kamal)
This Team in the News
Six Students Named Inaugural Nakayama Public Service Scholars
A Virtual Stroll through the 2021 Bass Connections Showcase
See related teams, REGAIN: Roadmap for Evaluating Goals in Advanced Illness Navigation (2021-2022) and REGAIN: Roadmap for Evaluating Goals in Advanced Illness Navigation (2019-2020).
- David Casarett, School of Medicine-Medicine: General Internal Medicine
- Dalton Hughes, Medicine–Neurobiology–Ph.D. Student
- Karen Steinhauser, School of Medicine-Population Health Sciences
/undergraduate Team Members
Madison Canfora, Neuroscience (AB)
Ezra Kalmowitz, Biology (BS)
Erica Langan, Biology (BS)
Evan Liu, Biology (BS)
Alexandra Merz, Chemistry (AB)
Mihir Patel, Biology (BS)
/yfaculty/staff Team Members
Christopher Cox, School of Medicine-Medicine: Pulmonary, Allergy and Critical Care Medicine
Weston Jordan, Duke University Health System
Arif Kamal, School of Medicine-Medicine: Medical Oncology
Brystana Kaufman, Fuqua School of Business-Health Sector Management Program
Thomas Leblanc, School of Medicine-Medicine: Hematology
Monica Lemmon, School of Medicine-Pediatrics: Neurology
Laura Porter, School of Medicine-Psychiatry and Behavioral Sciences
Katherine Ramos, School of Medicine-Psychiatry: Behavioral Medicine