Project Summary

Background: Lack of preparation for the myriad complex medical decisions over the course of advanced illness can lead to uninformed choices, receipt of care inconsistent with patient goals, and lack of patient empowerment. PCORI-tested PREPARE supports patients in thinking about treatment wishes, talking with family about what matters most, and participating with clinicians in making real-time medical decisions. Despite its efficacy, many clinicians and patients are unaware of PREPARE.

Proposed Solution to the Problem: The solution is to build capacity to increase uptake of PREPARE in healthcare and community-based settings throughout California by better understanding the critical barriers, opportunities, and messaging needed to increase use; developing and testing a dissemination strategy that addresses those learnings; and creating a California-specific data dashboard to track PREPARE among English- and Spanish- speaking patients.

Objectives: This project will leverage the Coalition for Compassionate Care of California’s (CCCC’s) vast network of diverse stakeholders to conduct an environmental scan of the advance care planning (ACP) ecosystem in California to better understand the barriers, opportunities, and messages needed to increase PREPARE uptake; create and focus-group test a prototype dissemination strategy; and develop a California-specific PREPARE data dashboard to track PREPARE for use during future statewide dissemination.

Activities: The environmental scan will have two components: an online survey and one-on-one interviews. The survey will identify the status of ACP, particularly the use of PREPARE at healthcare and community-based organizations across California. The project team will explore the survey findings in more detail by interviewing five to six individuals. Based on findings, the project team will create a prototype dissemination strategy to address organizational workflow, processes, and messaging. The dissemination strategy will be refined through an iterative series of three to five focus groups. The project team will develop a custom online, interactive, dynamic analytics dashboard to track PREPARE usage and downloads of materials in English and Spanish.

Projected Outcomes and Outputs: 
Short-term outcomes (PCORI-funded period) are:

  • Creation of the environmental scan online survey and interview guide
  • Results of the environmental scan
  • Focus-group tested workflow, processes, and messaging
  • California-specific PREPARE data dashboard
  • Tested plan to increase statewide dissemination and uptake of PREPARE

Medium-term outcomes (0-2 years post-project) are: 

  • An operational California-specific PREPARE data dashboard 
  • Incorporation of learnings from the scan and focus groups into CCCC’s education, communication, and outreach on ACP to both clinicians and the public, as well as on the PREPARE website

Long-term outcomes (3+ years post-project) are: 

  • Closer working relationship between CCCC and University of California, San Francisco, two key leaders in the ACP movement in California, leading to increased promotion, use, and tracking of PREPARE in the state

Patient and Stakeholder Engagement Plan: A Stakeholder Advisory Group of 10 to 12 people representing diverse interests and perspectives including patients will meet on a triannual basis and guide all aspects of this project. Input from a broad swath of healthcare and community-based organizations and individuals across California will be obtained through the online survey. More in-depth input will be obtained through the five to six one-on-one interviews, as well as the iterative series of three to five focus groups.

Project Collaborators: The project is being co-led by the Coalition for Compassionate Care of California and the University of California, San Francisco.

Project Information

Kristine Wallach, BA
Coalition for Compassionate Care of California
$248,305

Key Dates

24 months
2021

Tags

Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 9, 2022