REGAIN: Roadmap for Evaluating Goals in Advanced Illness Navigation (2021-2022)

Background 

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.

Patients who do not have access to open, accurate and empathetic communication about their goals may receive treatment that is overly aggressive and costly, which creates financial burdens for them and for their families. Poor communication also leads to increased side effects of treatment that could have been avoided, and worse quality of life due to additional time undergoing unnecessary tests and treatment.

As the population ages, and as healthcare decisions become more complicated, it is increasingly important to ensure that all patients have access to thoughtful, open and accurate communication about their goals.

Project Description 

REGAIN is a collaboration between Duke Health (including the School of Medicine and the School of Nursing) and Duke University. The aim is to develop and implement a roadmap for goals of care conversations for Duke Health patients with 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 will investigate patient-provider communication in two complementary ways, via a “hub and spoke” model.
 
Mentored projects (‘spokes’): First, each student team member will be assigned to a mentor on the REGAIN team. Students will work on projects within the mentor’s field of research, selected for their fit with REGAIN’s overarching goal of improving communication in serious illness. Projects and their mentors for 2021-2022 include:

  1. Creation of a dashboard to display communication and treatment at the end of life (Dr. Casarett) 
  2. Improving behavioral therapy skills to aid communication (Dr. Winger) 
  3. Parents’ decision-making in the setting of a child’s neurologic injury (Dr. Lemmon) 
  4. Analysis of attachment style, partner communication and physical well-being among couples coping with cancer (Dr. Ramos) 
  5. Analysis of patient-reported outcomes in advanced cancer (Dr. Leblanc) 
  6. Mobile-health app to improve understanding of palliative care (Dr. Kamal) 
  7. Improving communication between patients with cancer and their partners (Dr. Porter)  

Central activities (‘hub’): In addition to individual mentored projects, all students and selected faculty will participate in a series of works-in-progress groups and seminars. These sessions will be arranged throughout the year, occurring three or four times per month, and designed to allow students to share the results of their projects with other students and faculty.

Learn more about this project team by viewing the team's video.

Anticipated Outputs

Findings for use in publications and grant proposals; further implementation of DATE (Dashboard of Aggressive Treatment near the End of life), presentations at national meeting 

Student Opportunities

Ideally, this project team will be comprised of 1 graduate student and 6 undergraduate students. The team should be diverse with respect to both levels and disciplines, including learners from Duke University (e.g., undergraduates, graduate students, postdocs) and Duke Health (e.g., medical students, nursing students, residents and fellows). Students from all disciplines/majors are welcome to apply. Students from the following areas might find REGAIN most consistent with their interests: social sciences, data science/computer science, prehealth, humanities/ethics and theology.

REGAIN offers learners a unique opportunity to gain experience in wrestling with real world problems in a complex healthcare system. Students will have the chance to become familiar with healthcare approaches to improving patient-centered care, participate in project-focused quality teams, engage with clinical stakeholders, contribute to publications and presentations, participate in data management/analysis, learn how to communicate within a multidisciplinary team, and benefit from professional development and feedback as well as peer-level support. Team leaders are enthusiastic about the opportunity to support undergraduate and graduate students through the process of poster development and grant and publication writing, with the understanding that, for some, this may be a first exposure to the field of academic medicine.

Team members will engage in collective inquiry and problem-solving to understand the data and propose and test solutions in three settings: weekly project meetings between students and their mentors at mentor sites; biweekly “Works in Progress” seminars with all REGAIN project contributors and leaders; monthly check-in meetings with project manager and team leaders.

Dalton Hughes will serve as project manager. 

Timing

Fall 2021 – Spring 2022 

  • Fall 2021: Seek IRB approval and complete HIPAA training; begin research-specific tasks with faculty mentors; meet with mentor and subteam on a weekly basis; attend REGAIN meetings biweekly with other students and project manager
  • Spring 2022: Continue research with mentors; attend REGAIN meetings biweekly; summarize research findings for Bass Connections Showcase; incorporate guidance regarding manuscript, book chapter and/or poster preparation 

Crediting 

Academic credit available for fall and spring semesters

See earlier related team, REGAIN: Roadmap for Evaluating Goals in Advanced Illness Navigation (2020-2021).

Communication.

Team Leaders

  • 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

  • Alice Chun, Public Policy Studies (AB), Global Health (AB2)
  • Haripriya Dukkipati, Biology (BS)
  • Avery Garmon, Psychology (BS)
  • Daniel Lee
  • Samarth Menta, Public Policy Studies (AB)

/yfaculty/staff Team Members

  • 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
  • Joseph Winger, School of Medicine-Psychiatry and Behavioral Sciences