Definitions for Data Collection and Evaluation System


Advocate/Family Professionals

Performance Measure 1A and 3
A family representative who is participating in an event in a professional capacity (i.e. Family Voices staff, PKU Alliance).


Education

Performance Measure 1A
The process of systematically teaching individuals to acquire and improve job-related skills and knowledge.
Source: https://en.wikipedia.org/wiki/education


Facilitated connections to genetic healthcare service

Performance Measure 2A
When RGN-supported activity demonstrates a direct connection to a patient receiving genetic healthcare services.


Facilitated connections outside of health care system to genetic services

Performance Measure 2B
When services are provided through RGN-support to connect individuals/families to genetic services (healthcare or other support services relating to the patient’s genetic conditions) outside of the healthcare system through a one-on-one communication.


Families/Individuals

Performance Measures 1A, 2, and 5
Adults, youth, and children with or at risk for genetic disorders accessing genetic services, as well as their family members.
Source: Regional Genetic Service Center Models Recommendation Brief March 31, 2016: Page 4


Genetic Providers

Performance Measures 1A and 3
Geneticist, genetic counselor, metabolic dietitian, or genetic nurses. Fellows and trainees (individuals that have received their degrees) can be counted as genetics providers.


Medically Underserved

Performance Measures 1A, 1B, 2A, 2B, 3, 4, and 5
Areas or populations designated by HRSA/HPSA as having too few primary care providers, high infant mortality, high poverty or a high elderly population. recipients, and rural communities. Individuals who reside an MUA zip code (as defined by HRSA) are considered medically underserved.
Source: NOFO HRSA-17-082: Page 1 footnote 1 http://www.hrsa.gov/shortage/find.html


Non-Genetics Speciality Provider

Performance Measures 1A and 3
MD/DO, NPs, PAs, dietitians, and others that work in specialty practices/settings


Other Providers

Performance Measures 1A and 3
Other types of providers such as early intervention, public health professionals, researchers, social workers, healthcare interpreters.


Patients

Performance Measures 2A and 5
An individual awaiting or under medical care and treatment.


Primary Care Provider

Performance Measures 1A and 3
A physician (M.D. – Medical Doctor or D.O. – Doctor of Osteopathic Medicine), nurse practitioner, clinical nurse specialist or physician assistant, as allowed under state law, who provides, coordinates or helps a patient access a range of health care services.
Source: https://www.healthcare.gov/glossary/primary-care-provider/


Providers

Performance Measures 1A and 3
Providers include: Genetics providers, Non-genetics specialty providers, Primary care providers, Other providers, Advocates/Family Professionals, Professional Students



Salary Support

Performance Measures 2A

Salary to a provider who would not be able to perform the genetic healthcare service without the salary support


Students

Performance Measures 1A, 1B, and 3
Students in high school and higher education students who participate in RGN-supported activities.


Technical Assistance

Performance Measures 3
Technical assistance to a provider is about helping that individual provider with “mutual problem solving and collaboration on a range of issues, which may include program development, clinical services, collaboration, program evaluation, needs assessment, and policy and guidelines formulation. It may include administrative services, site visitation, and review/advisory functions”.


Telegenetics

Performance Measures 3, 4, and 5
A genetics appointment that takes place via interactive video conferencing. Other telephonic modalities are excluded.


Telegenetic distant site

Performance Measure 4
Where the specialist is located during a telegenetics appointment.


Telegenetic originating site

Performance Measure 4
The location of the patient at the time of the genetics appointment.


Telehealth

Performance Measures 3, 4, and 5
Use of electronic information and telecommunications technologies to support long-distance clinical health care, patient and professional health-related education, public health, and health administration.
Source: NOFO HRSA-17-082: Page 1- footnote 2


Telemedicine

Performance Measures 3, 4, and 5
Use of medical information exchanged from one site to another via electronic communications to improve a patient’s clinical health status.
Source: American Telemedicine Association cited in NOFO HRSA-17-082: Page 1- footnote 3


Telehealth training

Performances Measure 3
Teaching others how to deliver genetics services via interactive videoconferencing. The trainings that can be counted are: Heartland Telegenetics Training, WSRGN Telegenetics Training, or Other HRSA-approved training programs.


Training

Performance Measures 1A and 3
Training is specific to advance the knowledge base or skillsets in genetics or the genetic service delivery system. Training may be delivered in-person or online.


Twitter Impressions

Performance Measure 1B
Times a user is served a Tweet in timeline or search results

Source: Twitter