ImproveCareNow believes in doing research with parents/patients, not for or about them. The practice is called Research Co-Production and it means that parents/patients are not only participants in research, but also that they are team members involved in coming up with research questions, designing research studies, running the studies and sharing the findings. We believe that co-producing research can make it more relevant and improve the quality.

Traditionally, research has not been done this way. So it’s up to us to design a system that supports this type of partnership. Here’s how we’re building opportunities for research co-production in ImproveCareNow.

We’re making it the rule, not the exception. With support from the Research Steering Committee we’re making it part of the standard way we do research. Standard requirements include:

  1. All research proposals will be reviewed by a team including one parent/patient who evaluates the proposal from the perspective of a parent/patient.
  2. All proposal applications must justify how parents/patients have been, or will be, involved at each stage of the research process from idea development to sharing the research results (and if not, why).

We’re increasing the ImproveCareNow community’s know-how around research co-production. Educational components include:

  1. Talking with the Research Steering Committee and Parent Working Group Research Subcommittee about how to meaningfully support research co-production in our network
  2. Providing research 101 training at the ImproveCareNow Community Conference
  3. Curating and sharing  examples of research co-production that are happening in ImproveCareNow

We’re making connections. By developing a Researcher Matchmaking program we can connect parents/patients with studies so they can join the team.

We’re raising awareness and building the idea of research co-production into the culture of ImproveCareNow by:

  1. Highlighting parent/patient/researcher partnerships
  2. Encouraging everyone in ImproveCareNow to share ideas for research questions and studies
  3. Developing and promoting opportunities for parents/patients to participate on research teams

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