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Returning Study Results

Public Group active 5 months, 1 week ago

A sub-group of the Research Innovations Work Group to study the landscape of information, guidelines, principles and resources around the subject of returning study results to participants, evaluate existing tools and/or develop common tools and promote collaboration across PCORnet, the national RIC and beyond.
The scope of this group is limited to the process of returning final study results to participants and not the return of individual study results to participants.

Annotations: UCSF CAPS CAB Recommendations for Research Dis

This topic contains 0 replies, has 1 voice, and was last updated by  Elizabeth Cope 11 months, 2 weeks ago.

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    Elizabeth Cope

    Title: UCSF CAPS Community Advisory Board Recommendations for Research Dissemination (2013)


    • Guide developed by UCSF’s Center for AIDS Prevention Studies (CAPS) Community Advisory Board (CAB) to encourage and guide CAPS researchers in expanding their dissemination efforts to better reach community-based organizations, policymakers, and community stakeholders.
    • Includes high-level recommendations for disseminating study results to participants, service providers, policymakers, and the community at-large.
    • Recommendations for dissemination to study participants:
      • Ask study participants how they would like to be informed of findings.
      • Use multiple methods to disseminate findings to study participants including Q&A forums, articles in the lay media, newsletters, websites, and listservs.
      • Disseminate positive, negative, and null results.
      • Make dissemination accessible paying attention to language and literacy needs of audience as was done during the outreach/recruitment study phase.
    • Ideas for involving participants in dissemination:
      • Include a question at the end of the baseline survey: Would you like to know the results/be kept informed/find out more about this research study? If so, how can we contact you? (email, regular mail, etc.)
      • When appropriate, hand out cards to all participants with dissemination information. For example: set a time 6 months later when participants can come back and get a newsletter/flyer, see a poster, hear a presentation; give a link to a study website; etc.
    • Types of information that could be disseminated include: basic study description, recruitment plan/materials, baseline data (descriptives, interesting findings), research instruments, follow-up data, analyses, final findings.


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