May 24, 2016 by Nadia E. Browne
Recently, I had the pleasure of attending the inaugural Patient-Oriented Research (POR) Summer Institute in Calgary, Alberta. This conference was hosted by the Alberta Strategy for Patient-Oriented Research (SPOR) support unit – Career and Development Platform.
The SPOR support unit was launched in August 2011 by the Government of Canada through the Canadian Institutes of Health Research (CIHR). It delivers services through seven platforms or divisions: (1) Data Platform, (2) Methods Platform, (3) Career and Development Platform, (4) Patient Engagement Platform, (5) Consultation and Research Services Platform, (6) Knowledge Translation Platform, and (7) Pragmatic Clinical Trials Platform.
Of the seven platforms, I attended workshops and presentations focused on the Patient Engagement Platform. These workshops and presentations helped to broaden my knowledge with respect to the value of engaging patients effectively using the modified Spectrum of Patient Engagement in Research (original version), as well as the barriers preventing patient engagement. One particularly important aspect of patient engagement is the relationship with attrition, which is a large problem in pediatric weight management. For example, Hampl et. al conducted research in pediatric obesity clinics and programs to identify the barriers associated with attrition. They found that patient engagement and retention practices addressing the needs of families including (1) the inability of caregivers to miss work, (2) transportation difficulties and (3) children having to miss school would pay dividends in the future.
In Spring/Summer 2016, the RMI-Family study will begin recruiting study participants. The RMI-Family is a longitudinal study; therefore, reducing attrition of study participants would be beneficial for families as well as study outcomes and data quality. Using the Spectrum of Patient Engagement in Research can be of significant value to the RMI-Family study and may reduce attrition.
Having increased my knowledge base in POR, networked with fellow graduate students, POR researchers, patients, clinicians and other stakeholders, I can’t wait for the Patient-Oriented Research Summer Institute 2017!