Telegenetics Meeting Summary/Notes

March 26, 2012

In Attendance,

Sylvia Au, Liza Creel, Patricia Carroll, Rosemarie Smith, Ellen Otten, Luba Djurdjinovic, Hans Andersson, Mike Watson, Barry Thompson, Matt Tranter, Alisha Keehn, Scott Boutaugh

Participating offsite,

Debi Sarkar, Jill Shuger, Liz Ritchie

Notes

Introductions

Telegenetics Evaluation Tools

Liza intro, goal of meeting to establish common evaluation tools for RC and providers. Highlight data collection and effectiveness of service delivery.

Mike – new cycle, increase evaluation of (nonexistent) data. New CPT, ICD codes will assist in (currently) laborious claims. Access to quality services and evaluation aspects of new cycle fit with telegenetics quite well. New independent evaluator will also assist in this work. Anticipating regional and state data that can be used by the workgroup to document work, as well as increasing ability to determine successful efforts of NCC and RC system.

Alisha – work today around common evaluation tools fit well into our next cycle, and will function as a test for this process in other activities. Next year will set foundation for the subsequent two.

Hans – concern that evaluations will be viewed in light of changes resulting from telemedicine. Due to nature of service, this is close to impossible to document.

Sylvia – only home monitoring form metabolic patients could provide this type of data, similarly to improved outcomes with analogous services to diabetic patients. Wouldn’t have to be “home phe” monitor.

Hans – outcome can only result from intra-patient, which is a tricky business. If do not show a statistical difference in phe levels, does this speak to lack to effectiveness of telemedicine.

Consensus – relying on phe levels (exclusively) would be a mistake for evaluation tools.

Sylvia – increase in use of genetic services through telemedicine, i.e. consumers wouldn’t have sought out their care without telemedicine service.

Hans – Patient and physician/counselor satisfaction measures are useful, however, health changes due to variation in results, regardless of care, would be inherently suspect/useless.

Liza – patient satisfaction tools lack usefulness, as results are consistently high.

Mike – access is emphasized in the new guidance, especially simplification of access. Additionally, this data can be readily quantified.

Hans – speed of care delivery.

Rosemarie – however, due to nature of telemedicine, consumers may have slower access to care with its use, however, these same patients WOULD NOT receive care otherwise. This increased demand, while it could possibly skew data, is actually an indication of desire for telemedicine service by consumers.

Sylvia –issues with telemedicine also include absence of a “stand by” patient when a telemedicine patient doesn’t show up for an appointment, as is the case with in person appointments.

Jill – evaluation of telemedicine is a HRSA wide mandate, and not specific to telegenetics. Emphasis to IMPACT of telemedicine as opposed to alternate service delivery.

Debi – Impact emphasized, but HRSA cannot give demands on how to measure these data.

Jill – impact is important due to justification requests on funding.

Sylvia – if HRSA wide mandate, will there be HRSA-wide evaluation measures?

Jill – suggestion to discuss with alternate branches/groups to harmonize measures.

Liza – satisfaction patient/provider, cost analysis, want to look at and identify core questions to collect data on so can assess impact of projects/care. Only one evaluation measure related to telemedicine “number of patients given care via telemedicine due to efforts of RC/NCC system”

Luba – isolated populations who would not otherwise receive care as possible evaluation measure. Decreased expenditure by insurers may also be useful measure.

Liza – Would like to focus on core questions. Cost has been underemphasized across the RC system. Would welcome volunteers to continue exploring these efforts in the next several months.

Review of RC telemedicine activities and previous evaluation efforts

Universally, providers believe that some consumers would not have accessed genetic services without telegenetics.

Sylvia – weakness of surveys in that takers may “grade” differently, even with equivalent opinion on service. Need ability in evaluation to segment the types (conditions, # of visits, etc.) of patients to control.

Region 2 - The survey was sent out and approximately 40% of the people responded. They are thinking about setting up a list serve to promote conversations regarding language and technology barriers that could prove difficult.

Region 3 - 3 total states are doing telemedicine and are using it for grant coordination. They have been unsuccessful in getting most states to set it up. All have access to telemedicine but most just aren't using it. They see a lot of room for growth but are lacking the people to do the work.

Region 4 & 5 - not present on the call

Region 6 – RC-funded project delivering genetic counseling via telemedicine (Billings Clinic, Montana) is set to be fully incorporated into usual practice starting June 1, 2012, without additional RC funding. They are hoping to expand Colorado newborn hearing genetic counseling project into metabolic follow-up in new grant cycle. They have funded a new project at Cook Children's genetics clinic by funding a new mobile telemedicine unit that expands access of providers to telemedicine equipment. This region has a new project with a health system serving Native American communities in Arizona that will use mobile health tools in the home to improve genetic assessments. They have a telemedicine workgroup in the region. All projects are collecting patient and provider satisfaction data, and some are looking at adding evaluation measures to assess impact of telemedicine programs.

Region 7 - Continuing telegenetic activities in Hawaii. Oregon now provides telegenetics to Alaska and Idaho where there are no pediatric clinical geneticists. Looking to increase ease of access to telegenetics for specialists. New LEND program in Guam; Hawaii will increase telegenetic services provided to the territory. Idaho will begin telegenetics counseling for prenatal and cancer risk assessment patients, Hawai‘i program working closely with state telehealth network to collaborate on activities.

Possible Measures

·  Change in no-show rate (telemedicine vs. in-person)

·  Areas (zip codes) that previously were underserved without telemedicine

o  Or alternate regional evaluations, such as reach of providers (to underserved regions)

o  May be issues due to IRB

·  Time savings due to telemedicine

·  Include some measures of genetic counseling/education

·  Increased partnerships due to telemedicine (geneticists & pcp, etc.)

·  Education of consumers or non-geneticist providers (PCP, residents, etc.)

·  Provider side impacts

o  # of patients seen

·  Continuity of care

·  Cost

o  How it affects billing

o  Cost/benefits of telegenetics

§  Opportunity costs

·  Decreased work/school leave (for parents/guardians, or patients of working age)

§  ROI

o  System cost

·  Satisfaction patient/provider

o  Alternatives if telemedicine was not available

o  Satisfaction based on type of unit

o  Provider access to system

o  Travel savings

·  Access

o  Not exclusively ease of consultation, for example: affordability, language barriers, cultural sensitivity,

·  Inpatient vs. outpatient

Previous Survey Efforts, and those moving forward

Hans – It would be useful to take a snapshot of current practices. Previous was education and research; those may not be useful at this point. Should attempt specific targeting.

Professional vs survey monkey (or equivalent)

Limit to ~5 questions (or less).

Could be useful as a baseline for future years/survey iterations.

Useful to find spectrum, and outliers.

Use clinical centers and genetic counselors database.

Survey (Remote/Distance health services)

  1. Personnel
  2. Genetic Counselor
  3. Clinical Geneticist
  4. Nurse
  5. NP or PA
  6. Other (text field)
  7. State
  8. Institution
  9. Method
  10. Telephone only full genetic counseling session
  11. Video conferencing using mobile devices (laptop, cellphone, tablet, etc)
  12. Video conferencing using telemedicine dedicated facility
  13. Video conferencing using office workstation (personal computer)
  14. Video conferencing using portable workstation (telemedicine cart)
  15. Service Delivered (multiple choice)
  16. Out-patient genetic evaluation and management
  17. Sessions per year
  18. 0-25
  19. 25-50
  20. 50-75
  21. 75-100
  22. 100+
  23. Inpatient genetic evaluation and management
  24. Sessions per year
  25. 0-25
  26. 25-50
  27. 50-75
  28. 75-100
  29. 100+
  30. Genetic counseling
  31. Sessions per year
  32. 0-25
  33. 25-50
  34. 50-75
  35. 75-100
  36. 100+
  37. NBS Follow-up
  38. Sessions per year
  39. 0-25
  40. 25-50
  41. 50-75
  42. 75-100
  43. 100+
  44. Metabolic (not NBS)
  45. Sessions per year
  46. 0-25
  47. 25-50
  48. 50-75
  49. 75-100
  50. 100+
  51. Contact for more information