The Minnesota Chapter of the American Academy of Pediatrics (MNAAP), together with Gillette Children’s Specialty Healthcare, the Chloe Barnes Advisory Council on Rare Diseases and the Minnesota Department of Health, hosted a roundtable event to discuss barriers and potential solutions in transitioning medically complex pediatric patients to adult care.
Close to 500 people from across the country and even other countries registered to be in the virtual audience for the event and close to 250 persons eventually “attended.” They were joined by six expert panelists and two moderators. The panelists included: Dr. Wendy Allen-Rhoades (Mayo Clinic); Dr. Nate Chomilo (Park Nicollet and the State of Minnesota Medicaid and MinnesotaCare Programs); Dr. Kurt Elting-Ballard (Allina Health); Pat Lang (PACER Center); Dr. Nancy Mendelsohn (Optum Frontiers Therapies at United Health Group); and Dr. Dave Tilstra (CentraCare Healthcare). The roundtable was moderated by Dr. Tori Bahr (Gillette ) and Dr. Sheldon Berkowitz (Children’s Minnesota and MNAAP).
Prior to the afternoon event, a number of documents were sent to all the panelists and registrants, including “givens” that we could all agree were issues with transitioning these patients and that we didn’t need to dwell on (e.g. lack of enough adult clinicians willing to take these patients on to their practices), a set of questions for the panelists to think about, a document about health care transition in general and an article on transitioning these complex patients. The event then began with each panelist speaking to the prepared questions sent out to them dealing with barriers to transitioning these complex patients, followed by a panel discussion. There was then a one-hour audience Q&A with the panelists and the afternoon ended with the panelists sharing their major takeaways from the entire session.
Among the concluding statements made by the panelists were figuring out how to use technology to help with transitions (e.g. medical record transfers), partnering with other organizations to do transition well, making the right decision the easy decision, learning from other organizations and states that have had successes with transitioning, creating a robust clinician registry for clinicians willing to care for these patients and figuring out to include education on this topic with ongoing graduate medical education.
Next steps will include making an audio recording of the event available to the public, developing a summary document of the event, convening the panelists again to discuss their reflections on the event and possible future direction for our attention and putting together a list of resources on this topic: currently posted at bit.ly/ComplexCareResources. If you want to learn more, please contact me at sberkowitz1@gmail.com.