Patient Voices Network Blog

What are important initiatives for improving the research protections in PCOR?

Investigators at the Children's Hospital of Philadelphia (CHOP) are conducting an activity to identify and prioritize initiatives for improving the protection of human subjects and patient/other stakeholder contributors in patient-centered outcomes research (PCOR) and invite you to participate! 

Compared to traditional research, PCOR often involves patients, caregivers, and other non-researcher stakeholders (e.g., community members) in unique ways. In PCOR, patients and other stakeholders often act as research participants, but they may also serve as advisors to study teams, members of study teams, or investigators.

In PCOR, patients and other stakeholders may:

  1. Help researchers identify important research questions
  2. Design and implement studies
  3. Interpret and disseminate study results. 

The increased engagement of patients and other stakeholders in research has led to new challenges related to the protection of human subjects in research. The CHOP team is conducting a web-based crowd-voting activity to identify and prioritize what is needed to resolve some of these challenges.

If you are interested in participating in this initiative, set up an account, or contact Anna de la Motte for more information. We'll look forward to sharing results of this prioritization in a future blog post!


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