Telegenetics Workgroup Meeting Summary
December 7, 2011
Alisha K, Matt T, Brad S, Liza, Liz Ritchie (for Cindy C), Sylvia, Joyce, Luba, Patricia, Shobona, Rose Marie Smith
Telegenetics White Paper
· Result of policy meeting that involved the co-chairs at the time (Becky & Sylvia), ready to be submitted, unfortunately GIM is changing their publisher, which delayed the submission slightly. Was likely submitted Monday. AK will get submitted draft and distribute it to the workgroup, not for distribution.
Telegenetics Workgroup Meeting and Related Activities at 2012 ACMG Annual Meeting
· This year the ACMG Annual meeting is in Charlotte, NC, starting March 27th and running until the 31st. Possible all day meeting Monday the 26th, or an afternoon/evening session. Meeting content will likely focus on work where face-to-face interaction is necessary. Loose consensus for Monday afternoon meeting. NCC to reach out to exhibitors to help demonstrate/exhibit telegenetics products/methods. Possible area in vendor area to drum up interest in telegenetics, especially in trainees and younger generations of genetics professionals. Historically used Tuesday evening at the ACMG Annual Meeting to hold a community conversation, possibly use this time for a hands-on telegenetics workshop. Committed final decision on community conversation plans in the next several days. Even if evening session occurs, can still work with exhibitors to feature telegenetics workshop in the exhibit hall. Will wait on decision on Tuesday night session (telegenetics vs community conversation).
Telegenetics Training Project
· This is the Lori Williamson & Sylvia project, working with telehealth resource providers, and provide new genetic professionals (graduated in past 5 years) with hands on experience and background with telehealth equipment, resources, and reimbursement, in order to foster interest in incorporating telehealth in their current and future practice. Part of training is distance, other aspect is hands on. Project incorporates resource providers. Vendors also assist in funding.
Telemedicine Evaluation Tools—potential project of this workgroup
· At last regional meeting, discussion on developing evaluation tools for telegenetics. This group may be valuable in developing a standard evaluation for telehealth services. Tool should reflect criteria likely to create a sustainable program. Quality assessment difficult as data point selection isn’t standardized. Cost effectiveness especially can be cumbersome to calculate. ATA has some of these measures developed, WG should aim to work with the association to develop our tool. WG will send out an email asking RCs for their members who may have evaluation tools, and use those and ATA tools to begin our evaluation tool development.
Workgroup Update –each RC update on regional Telegenetics activities
· NEGC
o No update for this call, hoping to redo a survey.
· NYMAC
o No major update, however rumblings (Dr Vokley at U Pitt) on telemedicine projects developing in the region.
· SERC
· Region 4
o Recently a meeting sponsored by PNC bank, broached telemedicine. Informative (Marquette health) shared information on telehealth with meeting attendees. Hope to have more updates on the next call.
· Heartland
o Dr. Schaeffer and Smith doing sessions in the coming months. Working out protocols for common genetics conditions with pediatricians. Reason for this peer evaluation was to improve telegenetics consultations provided (as Dr. Schaeffer could only provide them twice a month). Been conducting these sessions since July 2011. Family response seems quite positive so far. Grant is scheduled until May 2012, hope to publish in October 2012.
· Mountain States
o Continue to fund small telemedicine projects in region, since last call, have begun to fund project at Cook Children’s Hospital in Fort Worth, Texas, to expand their existing telemedicine work. The regional telemedicine wg developing white paper on how telemedicine can strengthen medical home. Hope to publish in the spring. Also working with Dr Mark Carroll, who is lead on telemedicine in the Indian Health Service, and pediatrician in Hopi tribe. Talking with Dr Carroll about using telemedicine with the Hopi people.
· Western
o New telehealth resource center at U Hawaii, working with them to improve telehealth for Guam. Also Marin Schuener is working with LA VA to develop screening tool for breast and colon cancer risk assessment in VA records. Does telemedicine with VA centers across the state (CA).
ATA Conference Discussion
· Annual meeting taking place April 29th- May 1st, fall forum is September 11th-12th.
Next call will be January 4th.
Next Steps:
· ACMG Annual Meeting plans
· In-person Telegenetics Meeting
· Email to RCs asking for information on RC members who may have access to, or familiarity with evaluation tools
· White paper to be circulated among WG – not for distribution at this time