What roles can patient stakeholders have in the research process? 

Regardless of where you are in the research study cycle, there are likely opportunities for advocates to assist you with your research. Below are some examples of ways that advocates may help:

Research planning and design

  • Help design studies that are responsive to patients’ questions and needs.
  • Define important outcomes, including patient-reported outcomes.
  • Help identify and address barriers to patient participation.
  • Review study proposals.
  • Identify possible funding sources.
  • Review and provide feedback to improve study materials, such as consent forms, study communications and IRB submissions.
  • Provide letters of support for funding.

Conducting research

  • Promote study awareness and enrollment.
  • Play an advisory role throughout the course of the research.

Evaluation of results

  • Review the data and assist in determining conclusions by highlighting what has most relevance for patients.
  • Help prepare plain language summary of findings.
  • Suggest next steps and areas of future research.

Dissemination and implementation

  • Share results with the patient community, healthcare professionals, policymakers and the public.
  • Help incorporate new findings in practice guidelines and policies to improve care and outcomes.