Performance Measure Definitions /span>

Active Registered Participants

Any individuals who enroll in an RGN-supported education or training.

Related Performance Measure: 1A, 3

Advocate/Family Professionals

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

Related Performance Measure: 1A, 3

Annual Meetings

Annual RGN meetings count as one event (separate sessions do not count), and all participants should be counted only once.

Related Performance Measure: 1A

Clinical site type: Genetics

The site/entity is staffed by geneticists who apply genetics in the delivery of medical care, including evidence-based practices on the causes and inheritance of genetic disorders, and their diagnosis and management.

Related Performance Measure: 4

Source of the Definition: The definition is adapted from the journal, Nature.
https://www.nature.com/subjects/medical-genetics

Clinical site type: Primary Care

Primary care often involves first-contact care for people with an undiagnosed symptom, sign, or health concern. It is defined as care for individuals which is not organ- or problem- specific; longitudinal or continuous care; and with responsibility for coordinating other health services related to a patient’s care. It is care often provided by general internists, who are particularly well equipped to provide preventive care and diagnose and manage disease in a primary care setting.

Related Performance Measure: 4

Source of the Definition: The definition is adapted from the American College of Physicians
https://www.acponline.org

Clinical site type: Other specialties (e.g. cardiology, neurology)

A location where a medical specialist provider provides clinical specialty care other than genetics.

Related Performance Measure: 4

Clinical site type: Mixed type (primary and specialty care)

Multidisciplinary clinics that include primary care, mental health, and other specialties (excluding genetics).

Related Performance Measure: 4

Conference Exhibits

Exhibiting at state, regional, or national meetings.

Related Performance Measure: 1B

Conference Presentations and Posters

Includes:

  • National meetings
  • Regional meetings
  • State/Local meetings
  • External Workgroups/advisory committees/steering committees
    • Presentations given to internal workgroups/advisory committees/state teams cannot be not count
  • Poster presentations should be counted from:
    • National
    • Regional
    • State/Local

Related Performance Measure: 1B

Continued Support Clinic

“Continued support” clinic sites are those that previously received RGN support in the previous funding years (since June 2017) and continued to receive RGN support during the funding year.

Related Performance Measure: 4

Continued Support Provider

“Continued support” are providers that have received RGN support (telegenetics training and/or technical assistance) previously and received additional support during the funding year in Years 5-7 (June 2021-May 2024).

Related Performance Measure: 3

Continuing Medical Education (CME)

Continuing medical education consists of educational activities which serve to maintain, develop, or increase the knowledge, skills, and professional performance and relationships that a physician uses to provide services for patients, the public, or the profession.

Related Performance Measure: 1A, 3

Distance Learning Modules 

Count only modules or recorded webinars/training that RGN developed or directly-supported and are available for public access on RGN-supported website (e.g. recorded ECHO sessions, webinar sessions).

For password-protected websites/webpages, resources can be counted when anyone can sign up for an account. Password-protect websites/webpages meant for internal use cannot be counted.

For example: MGPN resources can be counted. Resources developed for the internal workgroups/teams of a RGN and cannot be counted.

Note: Recorded presentations cannot be counted in the same funding year. A recorded presentation/webinar can be counted in subsequent funding years as long as the webinar is on an RGN-supported websites. Presentation recordings on websites outside of the system are not counted.

Recorded educational modules: If CME is offered and there is registration information, it will be counted under 1A.

Related Performance Measure: 1B

ECHO Educational Sessions

ECHO activities can be didactic learning sessions, as well as case consultations. For those sessions that are presented for education/training purposes, they can be counted in PM 1A.

Related Performance Measure: 1A

Education

The process of systematically teaching individuals to acquire and improve job-related skills and knowledge.

Related Performance Measure: 1A

Source of the Definition: https://en.wikipedia.org/wiki/education

Facilitated connections to genetic healthcare service

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

Related Performance Measure: 2A

Facilitated connections outside of health care system to genetic services

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.

Related Performance Measure: 2B

Facebook Reach

Reach is the number of people who received impressions from a Page post. A person is only counted as “reach” regardless of how many time they see the post in their feed.

Related Performance Measure: 1B

Families/Individuals

Adults, youth, and children with or at risk for genetic disorders accessing genetic services, as well as their family members.

Related Performance Measure: 1A, 2, 5

Source of the Definition: Regional Genetic Service Center Models Recommendation Brief March 31, 2016 Page 4

Genetic Health Care Services

Genetic health care service is defined as a consultation between a patient and a health care provider trained in medical genetics or genomics (clinical geneticist, genetic counselor, metabolic dietitian, genetic nurse). The consultation is done for the purpose of screening, testing, diagnosis, treatment, and/or clinical support for a potential genetic condition.

Related Performance Measure: 2A

Genetic Providers

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

Related Performance Measure: 1A, 3

Source of the Definition: Regional Genetic Service Center Models Recommendation Brief March 31, 2016 Page 4

Instagram Reach

The number of unique accounts that saw any of your posts or stories at least once.

Related Performance Measure: 1B

Source of the Definition: https://business.facebook.com/business/help/665980910626369

LinkedIn Followers

Following someone on LinkedIn allows you to see the person’s posts and articles on your homepage without being connected to them.

Related Performance Measure: 1B

Source of the Definition: https://www.linkedin.com/help/linkedin/answer/32504/similarities-and-differences-between-following-and-connecting?lang=en

LinkedIn Impressions

The number of times each update is visible for at least 300 milliseconds with at least 50% in view on a (signed in) member’s device screen or browser window.

Related Performance Measure: 1B

Source of the Definition: https://www.linkedin.com/help/linkedin/answer/8261/view-update-analytics-for-your-linkedin-page?lang=en

Listserv

The number of individuals on RGN, NCC, or NGEFSC external listservs at the end of each funding year.

Note: Email lists to workgroups/committees/teams/etc do not count

Related Performance Measure: 1B

 

Live Webinar

A seminar or other presentation that takes place on the internet, allowing participants in different locations to see and hear the presenter, ask questions, and sometimes answer polls.

Related Performance Measure: 1A

Source of the Definition: https://www.dictionary.com/browse/webinar

 

Maintenance of Certification

Activities are performed continuously with requirements at specified intervals throughout the 10-Year cycle and are grouped into four parts:

  • Professionalism and Professional Standing
  • Lifelong learning and self-assessment
  • Assessment of Knowledge,
  • Judgement and Skills
  • Improvement in Medical Practice

Related Performance Measure: 1A,3

Source of the Definition: http://www.abmgg.org/moc/moc_progoverview.html

 

Medically Underserved

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.

Related Performance Measure: 1A,1B, 2A, 2B, 3, 4, 5

Source of the Definition: FOA HRSA-17-082 Page i footnote 1
http://www.hrsa.gov/shortage/find.html  

 

New Clinic Site

New clinic sites are those that received RGN support for the first time in the grant cycle during the funding year.

Related Performance Measure: 4

 

Newly Supported Provider

All providers are considered new in Year 4 (June 2020-May 2021). “New support” are providers that received RGN support (telegenetics training and/or technical assistance) for the first time during the funding year.

Related Performance Measure: 3

 

Newsletter

Count of newsletter editions (e.g. 12 issues of monthly newsletter) print or electronic and not ad-hoc email updates sent to listserv.

Related Performance Measure: 1B

 

Non-Genetics Specialty Provider

MD/DO, NPs, PAs, dietitians, and others that work in specialty practices/settings.

Related Performance Measure: 1A, 3

Other Providers

Other types of providers such as early intervention, public health professionals, researchers, social workers, healthcare interpreters.

Related Performance Measure: 1A, 3

Other Resources

Includes books, book chapters, electronic products (DVDs, audio, videotapes), doctoral dissertations, academic course development, reports and monographs (includes policy briefs and best practices reports).

If your resource does not fall into any of the other categories, discuss the specific product with NCC (who will consult with HRSA).

Related Performance Measure: 1B

Pamphlets

Count those that are not available electronically and were not counted in web-based product, (e.g., printed products).

Note: Includes unique flyers handed out at in-person meetings. It is a count of the number of flyers, not how many flyers are handed out. If the flyer is available online and counted as a web-based resource, it is not counted.

Related Performance Measure: 1B

Patients

An individual awaiting or under medical care and treatment.

Related Performance Measure: 2A, 5

Press Communications

TV/Radio/podcast interviews, newspaper interviews, public service announcements, editorial articles, and press releases

Note: Articles counted must be referencing the RGN or an RGN-supported activity.

Related Performance Measure: 1B

Previously Supported Site

Previously supported clinic sites are those clinics that previously received RGN support in the previous funding years (since 2017) and did not receive any RGN support during the funding year but continued to offer telegenetic services and submitted patient data for PM 5.

Related Performance Measure: 4

Primary Care Provider

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.

Related Performance Measure: 1A, 3

Source of the Definition: https://www.healthcare.gov/glossary/primary-care-provider/

Providers

Providers include: Genetics providers, Non-genetics specialty providers, Primary care providers, Other providers, Advocates/Family Professionals, Professional Students.

Related Performance Measure: 1A, 3

Published Peer-Reviewed Publications

Publication must be RGN-supported (includes the funding acknowledgment language):

  • For collaborative papers across the system, the lead RGN, NCC, or Family Center gets to count the publication.
  • For partnerships outside of the system, papers can be counted when the RGN author’s time is supported by the RGN.
  • Examples: Journal articles in Genetics in Medicine, Journal of Genetic Counseling, etc.

Related Performance Measure: 1B

Regional Genetics Network (RGN)

One of seven entities funded by HRSA under HRSA 17-082.

Related Performance Measure: 1A, 1B, 2A, 2B, 3, 4, 5

Source of the Definition: NOFO HRSA 17-082

RGN-support

Support is provided by the RGN for activities through: contracts, training (includes follow-up to training), technical assistance, quality improvement, funding, purchase of equipment and supplies,memorandum of agreement or in-kind funding, education.

Related Performance Measure: 1A, 1B, 2A, 2B, 3, 4, 5

Salary Support

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

Related Performance Measure: 2A

Slack Active Users

People are active — meaning they posted a message or read at least one channel or direct message.

Related Performance Measure: 1B

Select Recorded Webinar

Recorded webinars count when there is a registration and include educational content (i.e. CME/CEU offerings)

A webinar is a seminar or other presentation that takes place on the internet, allowing participants in different locations to see and hear the presenter, ask questions, and sometimes answer polls.

Related Performance Measure: 1A

Source of the Definition: HRSA and https://www.dictionary.com/browse/webinar

Select RGN-Education Events

Internal groups (workgroups, state teams, advisory committee, etc.) that include an educational component. This means that the meeting has an invited speaker (can be an RGN, NCC, or NGEFSC staff member) and has a set goal/learning objective that expands participants’ genetics or genetic service delivery knowledge. Activity updates, needs, assessment, strategic discussions, and/or information sharing do not count as education.

Please use this flow chart to determine if an event can be counted.

Related Performance Measure: 1A

Select RGN-Program Activities

On a case-by-case basis, a facilitated connection to a genetic health care service provided by a non-genetics health care provider can be counted. The RGN will review with HRSA the patient data that can be submitted for Performance Measure 2A.

Related Performance Measure: 2A

Sessions (Google Analytics)

A session is the period time a user is actively engaged with your website, app, etc.

Related Performance Measure: 1B

Source of the Definition: https://analytics.google.com/analytics/web/#/

Students

Students in high school and higher education students who participate in RGN-supported activities.

Related Performance Measure: 1A, 1B, 3

Technical Assistance

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”.

Related Performance Measure: 3

Teleconsultation

Consultation between a provider and specialist at distance using either store and forward telemedicine or real time videoconferencing

Telephone calls are excluded.

Related Performance Measure: 3, 4, 5

Source of the Definition: http://thesource.americantelemed.org/resources/telemedicine-glossary

Telegenetics

A genetics appointment that takes place via interactive video conferencing.

Other telephonic modalities are excluded.

Related Performance Measure: 3, 4, 5

Telegenetic Distant Site

Where the specialist is located during a telegenetics appointment.

Related Performance Measure: 4

Telegenetic Originating Site

The location of the patient at the time of the genetics appointment.

Related Performance Measure: 4

Telehealth

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.

Related Performance Measure: FOA HRSA-17-082 Page i footnote 2

Source of the Definition: 3, 4, 5

Telemedicine

Use of medical information exchanged from one site to another via electronic communications to improve a patient’s clinical health status.

Related Performance Measure: 3, 4, 5

Source of the Definition: American Telemedicine Association cited in FOA HRSA-17-082 Page i footnote 3

Telehealth education

Telehealth education is the acquisition of telehealth knowledge through the process of receiving or giving instructions.

Related Performance Measure: 1A

Telehealth training

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.

Related Performance Measure: 3

Training

Training is specific to advance the knowledge base or skillsets in medical genetics. Training may be delivered in-person or online.

Related Performance Measure: 1A, 3

Twitter Followers

Followers are people who receive your Tweets.

Related Performance Measure: 1B

Source of the Definition: https://help.twitter.com/en/using-twitter/following-faqs#:~:text=Followers%20are%20people%20who%20receive,they%20log%20in%20to%20Twitter

Twitter Impressions

Times a user is served a Tweet in timeline or search results.

Related Performance Measure: 1B

Source of the Definition: https://help.twitter.com/en/managing-your-account/using-the-tweet-activity-dashboard

Users (Google Analytics)

Users who have initiated at least one session during the date range.

Related Performance Measure: 1B

Source of the Definition: https://analytics.google.com/analytics/web/#/

Web-Based Downloadable Resources

A standalone PDF/file, that is not a video, that RGN developed or directly supported. Includes:

  • Toolkits (social media, public awareness campaigns, educational, training, etc). Each toolkit is counted as one resource.
    • Example: Public Health Genetics Week social media resources (graphics, sample text posts, GIFs) count as one resource.
  • Fact Sheets
  • Infographics
  • Algorithms
  • Apps
  • Podcasts

Related Performance Measure: 1B

Web-Based Other Resources

Other web-based resources that do not fall into the following categories: downloadable resource, website resources, or video resources.

Related Performance Measure: 1B

Web-Based Video Resources

Videos supported by the RGN are stored on RGN channel (YouTube, Vimeo, etc).

  • Example: Spanish NBS Screening Video, Telehealth Best Practices, MGN Families Share Telemedicine Experience

Related Performance Measure: 1B

Web-Based Website Resources

  • Count individual webpage (based on the site map) that has content on available resources and/or information relevant to program priorities.
  • A webpage should have additional/new information other than the content of the resource counted above. Webpages count:
    • If a webpage provides information about the RGN produced resources as well as other existing available resources. e.g. “Resource for families page on telehealth” page that has a curated list of resources on this topic
      • Examples: NYMAC Telegenetics Webpage, MSRGN State-Specific Webpages
    • If the webpage has embedded RGN-supported resource. (E.g. Find a clinic, Resource Repository, etc).
    • A webpage does not count if:
      • It duplicates the info exactly that is from a resource that was already counted.
      • A webpage that has the same content of an infographic that is also available in a PDF elsewhere and that infographic was already counted above
        • Example: NYMAC When to Refer to Genetics would count under PDF, not webpage.
      • A landing page “Resources for providers” that lists out the sub-categories of resources and links to the subpages
      • A “Project ECHO” page that just has links to all the previous recorded sessions
      • General pages like About Us, Contact Us

Related Performance Measure: 1B

YouTube Views

On YouTube a view is counted when someone watches 30 seconds of your video ad ( or the duration if it’s shorter than 30 seconds) or interacts with the ad, whichever comes first.

Related Performance Measure: 1B

Source of Definition:https://www.youtube.com/intl/en-GB/ads/resources/beginners-guide-to-video-insights-metrics/#:~:text=a%20potential%20customer.-,Views,the%20ad%2C%20whichever%20comes%20first

Zip Code

A system of postal codes used by the United States Postal Service. The basic format consists of five digits.

Related Performance Measure: 1A, 2A, 2B, 3, 4, 5

Source of Definition: https://en.wikipedia.org/wiki/ZIP_Code