Medical Home Work Group
September 10, 2015 8:30 am – 9:30 am
Minutes
Attendees: Greg Prazar, MD, Chair; Amy Belisle, MD; Monica McClain, PhD; Marinell Newton, MSW; Holly Tutko, MPH; Judy Shaw, EdD/MPH/RN
Agenda
· Membership on National Coordinating Center (NCC) Care Coordination Work Group
· Status of new membership for our work group
· Feedback from Burke/Donnelly webinar
· Updates on September 17 webinar
· Future Projects
· Plan for next call on October 8th
Membership on NCC Coordinating Center (NCC) work group
The email sent out by the NCC stated that this work group (with membership from each of the RCCs) will “help to identify gaps and barriers and recommend a new regional structure model (s), as well as continuing to provide collaboration between the regional collaborative.” That being said, Monica reported that the specific goals for this work group are likely not well formulated. Specific formulation will likely happen as a result of the first two –three calls. For now, Greg will be representing our group on these calls (3rd Wednesday of each month from 12:30-2pm) although his past experience with the previous work group was frustrating. Greg will be unable to be on the 9/17 call. Monica will be on the call.
ACTION: Monica will send Greg an email after the first call to summarize what transpired. Please email Greg if other members of our work group would like to replace him on these calls.
Status of new membership for our work
Massachusetts: Judy suggested that Judy or Sean Palfrey may have a suggestion for a parent member from their state. She thinks that the Palfreys would have great suggestions for possible members
Connecticut: Alex Geerstma has agreed to be the representative from CT.
Rhode Island: Tara invited Robert Burke from Brown to be a member. She has not heard back from him and was not available for today’s call.
ACTION: Judy will send Judy Palfrey’s email to Greg and Greg will contact Judy. If Judy Palfrey has no suggestions for a member, Greg will re-contact Ben Scheindlin. Greg will ask Karen to send an invitation letter to Alex.
Feedback from Burke/Donnelly webinar
Twenty-nine people responded to the survey. Responses indicated that the webinar was well-received. Specific suggestions for future topics:
· using a strength-based approach to work with families (20)
· case studies on how coordination works for families (18)
· internet and parent support groups as a source of information for Providers and families (14)
· How do I start working on care coordination? (13)
ACTION: Amy will ask Deb for the number of total attendees for this webinar. See Future Projects (below) regarding topic suggestions.
Updates on September 17th webinar
Amy met on 9/3 with Wendy Smith and Rosemary Smith to plan for the 9/17 webinar. The focus will be on the appropriate approach to diagnosing genetic conditions in practice. Some of the discussion will be case-based. We discussed that primary care providers sometimes order genetic tests without thinking of the costs or implications of the results. Often referral to a geneticist should be the first step when a genetic condition is suspected rather than ordering a battery of tests.
ACTION: Holly will send out a promotional email describing the proposed content for this webinar.
After our call, Amy sent the following to Holly to use in promotional email:
1. Discuss how is genetics already incorporated into primary care (ways in which families may have interacted with genetics- newborn screening (CF), metabolic screening, pregnancy screens)
2. What can primary care order and how to counsel the families
3. Who should be referred to geneticist
4. New genetic tests to highlight
5. Issues with new testing- ethical, legal, social, payment-are they covered by insurance, etc.
diagnostic testing vs. carrier status; genetic testing in children with affected sibling; adult onset disorders
6. Case studies (will incorporate AAP guidelines and GCPI toolkit)
a. family who orders their own direct genetic testing
b. management of Developmental delay
c. pregnancy using a pedigree-NIPS/health care supervision/references/support/care coordination (mosaic down syndrome)
d. older child-developmental delay- microarray testing vs chromosome testing (what not to order)
7. Care coordination and family supports available (camps)
8. What is on the horizon- “exome”
Future projects
Based upon feedback from the last webinar, the group decided to focus on using a strength-based approach to working with families. Effective communication with families and children with genetic and complex conditions poses a challenge to primary care providers. The group discussed that there needs to be a shift in the dynamics of communication among providers, families, and community resources (including schools). When primary providers are talking with families about a complex condition, there needs to be a deconstruction of the information in order to make sure the family understands the information and agrees with the plan. This represents a form of “constant check-in” with the family about the information being shared.
ACTION: Paula Duncan is the expert on strength-based communication. Judy will contact Paula and ask her to help us formulate an educational session (perhaps a webinar?) on strength-based communication.
Next call: October 8th @ 8:30 – 9:30