May 2023

 

Nice-to-Have VS. Need-to-Have

Written By: Carla Southward

So often patient engagement in a research study is considered a “nice to have”. It is not something researchers typically think of from the onset, and seldom is there ever a budget to do it. The truth is, involving youth and parents as research advisors are so much more than a nice-to-have, and for a national network facing challenges with recruitment, revisions, and relevance, it is a need-to-have.

Recently at the POPCORN conference, we asked attendees to share anticipated challenges for the network (figure 1).  We received 33 challenges that spanned across the stages of research, from planning the study to disseminating the results.  Three themes that emerged from this activity are challenges among recruitment, study revisions, and relevance of the network. Recruitment and retention of study participants is a common challenge in research, and it is one we asked youth, parents, and community representatives to help address. The Patient Engagement and Knowledge Mobilization Teams have been working together with MICYRN to identify how we can meet the needs of patients and families via communication and a patient-friendly website. What we are pleased to share is that feedback from our research advisors has already been making a difference for the network.  We heard loud and clear from our consultations that knowing what comes next in a study and using calendar invites is helpful for participants and their families. When we shared this feedback with POPCORN coordinators, they were very open and accepting of the recommendations from our research advisors and changes in practice have already been implemented at a site level. POPCORN coordinators also shared their challenges with recruitment, and together we are working on verbiage to support our coordinators and ensure they feel comfortable approaching families with children that are eligible for POPCORN studies. These partnerships between our research advisors and study team members are addressing both sides of the data collection, which will help ensure better recruitment, retention, and quality data.

Our work with our research advisors is in its infancy, and we will be working with the Indirect Consequences team and mental health experts to tackle other challenges for POPCORN, including staying relevant and ensuring our data analysis resonates with patients, families, and knowledge users. These partnerships are more than a nice-to-have, they are essential to our success and sustainability as a network.

WHAT CHALLENGES DO YOU ANTICIPATE FOR POPCORN?

Image of post-it notes which discuss what the anticipated challenges are for POPCORN, as submitted by POPCORN conference 2023 attendees

Figure 1: Anticipated challenges for POPCORN submitted by POPCORN conference attendees.

 

To learn more about ways to get involved in POPCORN research, please email:

Carla Southward, Patient, Family, and Engagement Coordinator
carla.southward@sickkids.ca.