Zarah

SPOR Program Facilitator in patient-oriented research

Zarah is a program facilitator at an academic hospital where she supports research teams at the institution and in the community who want to partner with patients in their research. She had studied global health and public policy in graduate school which contributed to her interest in reaching out to involve patients in helping to guide research initiatives and priorities. In her role, Zarah interacts with researchers, research and hospital staff, health care professionals and patients and she is always learning from each interaction and constantly thinking about how she can better support these individuals in developing research partnerships. Zarah believes that communication is a key ingredient in forming partnerships – to ensure that everyone is aware of each other’s motivations and expectations. For example, she suggests that research teams co-create (with patient partners) a terms of reference that can be continuously referred to throughout the research project, helping to keep all parties accountable. In the last few years, Zarah has seen the growing interest in patient-researcher partnerships and has heard many stories – both successful and challenging – about developing partnerships. She hopes that in time, research partnerships become more naturally engrained in the research process and that reporting guidelines are used so that patients and researchers can all share and learn from one another.

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• Measuring Impact of Partnership – Zarah 2
  Researchers must be careful not to evaluate patient partner roles when planning an evaluation of the partnership, says Zarah
• Measuring Impact of Partnership – Zarah
  
• Challenging Experiences – Zarah
  Zarah underestimated how difficult it would be to hear patients partners’ stories about their illness experiences
• Path to Involvement – Zarah
  Fresh from graduate school, Zarah was excited to find work in supporting partnerships
• Relationship building – Zarah
  Patients and researchers need to be honest with each other about expectations suggests Zarah