practices young adult pts with metabolic disorders. This would be done though consultation with Dr. Mark Korson and the Genetic Metabolic Center for Education (GMCE). GMCE is a new entity designed to support specialists who don’t have expertise in metabolics. Monica wondered if the model might work with family physicians as well. Dr. Korson and his business manager are happy to talk with our group, and the group agreed that they would like to hear more about this proposal. Karen will contact Mark and ask him and his business manager to be on our next call. Ardis (who joined the call at 9:15) will formulate some specific questions to ask Mark re: how the pilot project would work. Monthly NCC Care Coordination Workgroup calls At the NIPN meeting Greg talked with Chuck Norlin (the chair for these calls). We decided to suggest a project to document the efficacy of having care coordinators in practices. Suggested outcome questions to answer for practices who have care coordinators: Do children with complex conditions miss fewer days of school? Do parents of children with complex conditions miss fewer days of work? Do children with complex conditions have fewer hospitalizations and/or ER visits Meeting Planning and Hygiene Please identify yourself before you speak. Dealing with silence: On future calls, Greg may go the room” to ask attendees “round about their opinions; each attendee can if they have nothing to share “pass” Length of some calls may only need to be 30 minutes. TIME CHANGE FOR FUTURE MEETINGS: After Marinell, Kathy, Tara, and Alex left the call, Ardis and Amy signed on. The consensus was that calls will continue to occur the second Thursday of the month. New start time will be 9:15 am which seems to work better for most people. Other issues discussed Either Marinell or Cathy (Greg cannot remember who suggested this) will email Greg the address of Reba Porter, who is involved in a multistate study addressing family satisfaction with service delivery. Doing a project involving Family Voices and their involvement with families who have children with complex genetic and metabolic conditions. Tara shared that all states have a Family Voices group. To Do
practices young adult pts with metabolic disorders. This would be done though consultation with Dr. Mark Korson and the Genetic Metabolic Center for Education (GMCE). GMCE is a new entity designed to support specialists who don’t have expertise in metabolics. Monica wondered if the model might work with family physicians as well. Dr. Korson and his business manager are happy to talk with our group, and the group agreed that they would like to hear more about this proposal. Karen will contact Mark and ask him and his business manager to be on our next call. Ardis (who joined the call at 9:15) will formulate some specific questions to ask Mark re: how the pilot project would work. Monthly NCC Care Coordination Workgroup calls At the NIPN meeting Greg talked with Chuck Norlin (the chair for these calls). We decided to suggest a project to document the efficacy of having care coordinators in practices. Suggested outcome questions to answer for practices who have care coordinators: Do children with complex conditions miss fewer days of school? Do parents of children with complex conditions miss fewer days of work? Do children with complex conditions have fewer hospitalizations and/or ER visits Meeting Planning and Hygiene Please identify yourself before you speak. Dealing with silence: On future calls, Greg may go “round the room” to ask attendees about their opinions; each attendee can “pass” if they have nothing to share Length of some calls may only need to be 30 minutes. TIME CHANGE FOR FUTURE MEETINGS: After Marinell, Kathy, Tara, and Alex left the call, Ardis and Amy signed on. The consensus was that calls will continue to occur the second Thursday of the month. New start time will be 9:15 am which seems to work better for most people. Other issues discussed Either Marinell or Cathy (Greg cannot remember who suggested this) will email Greg the address of Reba Porter, who is involved in a multistate study addressing family satisfaction with service delivery. Doing a project involving Family Voices and their involvement with families who have children with complex genetic and metabolic conditions. Tara shared that all states have a Family Voices group. To Do