Project Summary

Background: Sleep apnea research is rarely designed with patient input, and rarely uses patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) approaches. Because of this, sleep apnea research often fails to address the outcomes that are most important to sleep apnea patients and focuses on a few dominant treatments instead of exploring a variety of treatments. The American Sleep Apnea Association (ASAA) is a national organization dedicated to improving the lives of sleep apnea patients. ASAA has created the Developing Patient Leadership Capacity in PCOR/CER Sleep Apnea Research project to address the lack of patient input, PCOR and CER in sleep apnea research studies.

Proposed Solution to the Problem: ASAA will create a Patient Leadership in Research (PLIR) committee composed of 12 patients reflecting the diversity in the project’s patient population. PLIR committee members will receive training in PCOR/CER, research stages, sleep science and sleep apnea. The committee will then develop a PCOR/CER training that teaches sleep apnea patients how to engage in conducting PCOR/CER and assist with the implementation of the early cycles of the training to refine the process. 

Objectives: The objectives of the project are as follows:

  • To develop and refine a training structure for patients to facilitate meaningful contribution to PCOR/CER sleep apnea research
  • To educate sleep apnea researchers about the value of PCOR/CER and the availability of trained patient partners
  • To connect trained patients to PCOR/CER projects as collaborators in research development

Activities: Throughout the project period, the PLIR committee, working with project staff, will conduct the following activities:

  • Complete training on research fundamentals, PCOR/CER, sleep science and sleep apnea
  • Use existing training resources to build the PCOR/CER Sleep Apnea Training curriculum and create a training plan
  • Recruit training participants and implement a pilot training
  • Evaluate and revise the training and implementation plan based on PLIR committee and pilot participant feedback
  • Recruit participants and implement two additional PCOR/CER trainings
  • Create a system to connect trained patients to research development opportunities
  • Create a system to notify research institutions about the availability of a pool of trained PCOR/CER sleep apnea patient researchers and educate researchers about the value of PCOR/CER
  • Evaluate the success of the project at achieving stated outcomes
  • Identify necessary resources for PCOR/CER training sustainability and create the infrastructure for project continuance

Projected Outcomes: ASAA will achieve the following outcomes with the project:

Short-term outcomes:

  • Outcome 1: Create, grow and maintain an active community of at least 40 sleep apnea patients trained to participate in conducting PCOR/CER
  • Outcome 2: Create at least one channel to notify PCOR/CER-trained sleep apnea patients of PCOR/CER opportunities
  • Outcome 3: Create awareness among at least 20 sleep apnea research institutions that ASAA has a pool of trained PCOR/CER sleep apnea patients who can help conduct research projects

Medium-term outcomes (zero to two years post project):

  • Outcome 1: ASAA will continue to offer the PCOR/CER training at least annually and will host training videos on its website.
  • Outcome 2: ASAA will educate researchers on the importance of integral patient involvement in all stages of the research process, focusing on patient-centered outcomes and a comparative effectiveness research design.

Long-term outcomes (three and more years post project period):

  • Outcome: Patient collaboration on research projects and PCOR/CER design will become standard practice for sleep apnea research.

Patient and Stakeholder Engagement Plan: ASAA will leverage its existing patient network, as well as its board members, to engage patients in the project.  Additionally, ASAA has an advisory board composed of sleep health professionals with connections to many institutions and organizations across the country.  The project team will use these networks and contacts to recruit participants for the PLIR committee, pilot training, PCOR/CER trainings and research institution engagement.  Project leads will pay special attention to ensuring a diverse cross-section of patient participants across all stages of the project.

Project Information

Gilles Frydman, BSc
Sarah Honaker, PhD
American Sleep Apnea Association
$250,000

Key Dates

December 2024
2022

Tags

Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: April 3, 2024