Project Background & Overview

Stakeholder Panel & Project Team Members
Stakeholder Panel & Project Team Members

Current approaches to dialysis care lack processes to elicit patient-prioritized goals and outcomes to inform individualization of care. Moreover, dialysis patients cite lack of meaningful care team engagement and personalization of care as detractors from the dialysis experience. To improve health outcomes, quality of life, and care satisfaction, our team is working collaboratively with a multidisciplinary stakeholder panel to shift the care planning paradigm from problem-based to priority-based. In doing so, we aim to better align dialysis care with patient-identified goals and priorities through better communication, shared decision-making, and close follow up. The project is funded by the American Institutes for Research (AIR), with support from the Robert Wood Johnson Foundation (RWJF), for a Patient-Centered Measurement Pilot, and guided, in part, by the Principles of Patient-Centered Measurement.

In-Person Stakeholder Panel Meeting, October 2018

Objectives

  1. Develop a process for patient priority-directed dialysis care planning
  2. Develop a measure of the alignment of dialysis care and patient priorities
  3. Pilot test the developed care planning process and measure

Expected Outcomes

  1. Priority-based dialysis care planning materials for patients and care teams including written materials and a supplementary short video “by patients, for patients”
  2. Dialysis care–patient priority alignment measure reflecting the concordance of dialysis care and patient priorities
  3. Report of key lessons learned to inform future measure refinements and advance similar measurement in other conditions

Project Reflections

In this 3.5 minute video, team members describe the motivation behind the project and share their perspectives on its significance. The video is a testament to the value of conducting research with multidisciplinary stakeholder involvement. Diverse backgrounds and experiences enrich conversations, broaden considerations and create checks and balances, resulting in product that is more meaningful and relevant. Learn more by watching the video below.

Team Members

Video Shoot, January 2019

Project Team

  • Jenny Flythe, Project Co-Lead, kidney doctor
  • Derek Forfang, Project Co-Lead, patient (California)
    • Derek has been a Type 1 diabetic since age 10 and an ESRD patient since 1999 utilizing various treatment modalities including transplantation, peritoneal dialysis and in-center hemodialysis. He Is the Chair of the National Forum of ESRD Networks, Kidney Patient Advisory Council, (KPAC), and Member on the Forum Board of Directors. He is the Chair of HSAG ESRD Network #17’s Patient Advisory Committee (PAC) and Chair of the Network #17 Board of Directors. He serves as Chair of the National Kidney Foundation’s (NKF) Kidney Advocacy Committee (KAC) and Chair the NKF Public Policy Committee. He also serves on projects with the Kidney Health Initiative.
  • Adeline Dorough, Project Coordinator
  • Abhijit Kshirsagar, kidney doctor
  • Darren DeWalt, general medicine doctor

Goal-Directed Care Consultant

  • Jim Mold, retired family medicine doctor

Stakeholder Panel

  • Colleen Chavis, patient (North Carolina)
  • Kevin Fowler, patient and family member (Illinois)
  • Shirley Franks, patient (North Carolina)
  • Dave White, patient (New York)
  • Lisa Harvey, dialysis organization clinical operations manager
  • Bradley Manton, dialysis clinic social worker
  • Lucy Menefee, dialysis nurse practitioner