11:00 am – 12:00 pm Saturday, September 17
The engagement of patients and caregivers is increasingly more important in the design, conduct and dissemination of research (Kwon, Tandon, Islam, Riley, & Trinh-Shevrin, 2018). Patient advocacy organizations, such as Momcology, are often developed and led by patients, parents and/or caregivers. These organizations are one mechanism to consider when working to implement community engagement and recruitment strategies. Community engagement is far more than the addition of a community advisory board to organizations such as hospitals, agencies or research trials. Authentic engagement should mimic a partnership, including stakeholders in all phases of research from design, conduct, implementation, analysis and dissemination (Woolf, Zimmerman, Haley, & Krist, 2016).
Benefits of these relationships include; a) directed research questions to priority areas and becomes “user-oriented”, b) shows respect to patients and vulnerable populations, c) enhances study design related to outcomes and methodology and d) elicits participant buy in. Research suggests patients and consumers perceive access and usefulness of existing research evidence as restricted (Carman & Workman, 2017). Collaborations with patient advocacy community organizations enhances the quality and impact of research. The need for useful evidence for patients, caregivers and health professionals is crucial to the development and expansion of research partnerships between patient advocacy organizations and researchers. These partnerships improve research relevance and increase adoption of findings (Forsythe et al., 2016). The aim of this educational session is to highlight the importance, experiences, and perspectives of a nurse researcher and patient advocacy organization, Momcology, in the conduct and dissemination of research within pediatric hematology/oncology.
- Professional Development Session: Professional Development GPS: The Long and Winding Road from Route 1 to Route 101 (CDE)
- General Session: APHON Advocacy: Ask, Tell, Ask (104)
- The Future of Nursing 2020-2030: What We All Need to Know (224)
- Pediatric Anticoagulation: Who, What, When, Where, and Why (and a little How) (225)
- Nutritional Support: Best Practices for Pediatric Blood and Marrow Transplant Patients (226)