Patient-Centered Outcomes Research Answer Key

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  1. How is patient-centered outcomes research different from other kinds of health research?

It focuses on questions that the patient community cares about. It compares health options. The process itself involves patients as partners.

  1. What are the three main areas of patient involvement?

Planning, Implementation, and Dissemination

  1. For each of these areas, describe one example of how patients can make a difference.

 Planning Research

  • Developing the research question and relevant outcomes to be studied
  • Defining the characteristics of study participants
  • Drafting or revising study materials and protocols 

Conducting Research

  • Drafting or revising study materials and protocols
  • Participating in recruitment of study participants
  • Participating in data collection and data analysis
  • Participating in the evaluation of patient and stakeholder engagement
  • Serving as a patient representative on a Data Safety Monitoring Board 

Dissemination

  • Identifying partner organizations for dissemination
  • Planning dissemination in the context of shaping study design and protocol
  • Authoring manuscripts and presenting study findings
  • Identifying opportunities to share information about the study, even as it is in progress
  1. What is the difference between efficacy trials and effectiveness or pragmatic trials?

Efficacy trials determine if an intervention works in ideal circumstances, while effectiveness trials or pragmatic trials are designed to see if it works in the real-world settings.

  1. What three factors are essential when designing a research question?
  1. The people (population of interest)
  2. The options (and the factors to consider when choosing between/among options)
  3. The outcome (what the research is intended to inform)
  1. Is there any way a patient voice in research might not be helpful? What do we need to keep in mind when exercising our voice?

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