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The New England Genetics Collaborative

Work Groups




Medical Home: Activities

One important goal of the work group continues to be the improvement of coordination and communication within the Medical Home. The work group is building on a body of work developed through National Health Care Transition Center (Got Transition?), funded by HRSA and by W. Carl Cooley, MD Work Group Chair, and. This body of work has built a step-by-step methodology to coordinate the transition from pediatric care to adult care within a Medical Home.

The methodology (called an algorithm) is part of a clinical report published in the American Academy of Pediatrics: “Health Care Transition Planning Algorithm for All Youth & Young Adults Within a Medical Home Interaction”. Testing the application of this algorithm has been underway, and will continue during this grant year. The work group is now applying the algorithm to specific conditions, beginning with sickle cell disease. The intent is to ensure the utility of the algorithm for use in the Medical Home and to improve patient involvement in the transition process.

Another feature in the clinical report, Six Core Elements of Health Care Transition, will also inform the work of the group.

Accomplishments

During the 2010-2011 grant year, a survey was conducted to assess primary care physicians’ comfort, clarity of role, and quality of communication in the co-management with specialists of children and youth with rare and/or complex chronic conditions. Findings indicated that:

  • pediatricians are more comfortable than family physicians with rare and complex cases
  • care decisions are made by specialist in consultation with PCP
  • a tool for co-management was needed. 

In 2011-2012, a second survey was conducted to complement the first survey. This survey was directed to metabolic and genetic specialists in the New England region. The results of this survey are still being evaluated. But initial indications are that:

  • communication processes need improvement; rarely is there two-way communication: and specialists often do not hear back from PCPs that they received their reports
  • all of those surveyed strongly agree with co-management with PCPs but there isn’t enough time to do this effectively
  • specialists agreed that the best existing methods for receiving referrals was by phone or fax, best way to hear from PCPs was by phone (though time consuming and disruptive), and best way for them to communicate results of a consultation was by letter
  • they agreed that these methods were not necessarily the best possible methods, and that better two-way or three-way(including parents) communication tools were needed.

Additional accomplishments include the Pediatric Referral/Consultation Family Care Plan, a care coordination plan developed for use by parents, primary physicians and specialists. Although it is not currently in use in New England, an article was published in Academic Pediatrics in 2013: Parent Partnerships in Communication and Decisions Making About Subspecialty Referrals for Children With Special Needs. Authors include members of the NEGC work group at the time the care plan was developed: Dr. Chris Stille, Beth Dworetzky, and Dr. Carl Cooley.