In my research area (sudden and unexpected infant death), it is not unusual for parents who have lost infants to attend and participate in our professional conferences. For our international meetings, there are always parents who are part of the conference planning. While I was surprised at first, I found the input of those who have been impacted by the topic of the conference to be enlightening and inspiring.
I know that participation of family members is also not uncommon for conferences centered on specific diseases (for instance, cystic fibrosis), but it is far from the norm for them to be involved in planning continuing medical education. Maybe that is starting to change.
This week, Pediatrics is early releasing a Family Partnerships article by Dr. Catherine Diskin, Kate Robinson, and colleagues from the University of Toronto, Northwestern University, and McMaster University, entitled “Family Partnership in Continuing Medical Education – A Collaborative Experience” (10.1542/peds.2022-060280).
The authors are comprised of medical professionals and family members of children with medical complexity who worked together to develop a continuing medical education seminar series, called C6 (Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities and Disabilities). The family members were integrally involved in every step of planning, and in leading each seminar session.
I was impressed with what they did. First of all, they had more than 1,700 registrants for the C6 seminar series, and the range of roles of the registrants (parents, advanced practice nurses, physicians, therapists, social workers, and dieticians, among others) reflects the range of expertise needed to care for children with medical complexity.
Each session was co-led by “family leaders,” who started each session by sharing their own lived experience to provide a wider context and perspective to the learning. This was followed by the didactic presentation, and then discussion by a panel of both clinical experts and family leaders.
I would love for this type of conference to be the norm. We need to learn, not only from the “clinical experts,” but the family members who are living this reality daily. As one family leader said, “We see ourselves as equal partners with clinicians in his clinical care. We simply have different expertise.”
Take a look at this article. Maybe we can begin to advocate for the inclusion of family leaders in planning and/or actively participating in our own continuing medical education sessions.