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Methods for turning community-generated research ideas into research studies

This topic contains 5 replies, has 4 voices, and was last updated by Profile photo of Cherie C Binns RN BS MSCN Cherie C Binns RN BS MSCN 3 months, 3 weeks ago.

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  • #977
    Profile photo of Hollie Schmidt
    Hollie Schmidt
    Participant

    What methods or systems have people come up with for developing community-generated research ideas into actual research studies?

    We’ve solicited nearly 300 research ideas from people with MS who are members of the iConquerMS PPRN. They cover a variety of topics like diet/nutrition, symptoms, risk factors, disease treatments, etc. We want to choose one or more of these to develop into an actual research study, including identifying funding and the needed expertise to carry it out. How should we go about this? Please share your experience and ideas!

     

    #984
    Profile photo of Tom Caruso
    Tom Caruso
    Participant

    The CCFA Partners PPRN used the Internet to poll people with IBD to come up with a ranking of their preferences.  I’m sure @amberrobb could provide more details about how this worked now.  Maybe she could post some screen shots to show the amazing CCFA Partners PPRN idea generation and voting functions?

    #986
    Profile photo of Amber Robb
    Amber Robb
    Participant

    Hi Hollie! I’m happy to share how we have turned community-generated research ideas into studies. Here is a link to our “Research Prioritization” section: https://ccfa.med.unc.edu/research. We ask participants to go to this webpage to propose, vote, and discuss research ideas on our portal. Then our research team discusses the research ideas that received the most ideas once per month. We respond to these ideas with an explanation as to why we can or cannot make the idea a “Top Priority” for our network. For example, if the idea has already been addressed by another research study, we will explain the results of this study and label the research idea as “Answered By Others”. For the ideas that have not been done and are a good fit for our network, we label them “Top Priority”. We encourage researchers who are registered in our network to submit proposals to study these ideas. We have a Project Selection Committee of researchers and patients who select projects to implement. The researchers then identify the funding source. (If you’d like more information about our review process, let me know)

    I’m happy to share more about our process. Feel free to reach out to me anytime at amber_robb@med.unc.edu.

     

    #1004
    Profile photo of Hollie Schmidt
    Hollie Schmidt
    Participant

    Thanks, Tom and Amber! I think your process would work well for us as well. I’ll take a look at your site and will definitely follow up for more information.

    #1035

    Like Hollie, I am interested in this topic so will look into this link as well.   Thank you Amber and Tom.

    #1145

    Amber,

    This is late in coming to this page altho’ we have communicated via email, but Hollie Schmidt and I really appreciated the time you took with us last Friday going over how you turn patient generated questions into Research.  There is a wealth of information in this Community and I encourage anyone here to reach out to others with questions you may have.  Our group’s question got us more information and real time assistance.

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