Performance Measures Defintions


Active Registered Participants

Performance Measure 1A and 3
Any individuals who enroll in an RGN-supported education or training


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).


Annual Meetings

Performance Measure 1A
Annual RGN meetings count as one event (separate sessions do not count), and all participants should be counted only once.


Clinical site type: Genetics

Performance Measure 4
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.
Source: The definition is adapted from the journal, Nature.https://www.nature.com/subjects/medical-genetics


Clinical site type: Primary Care

Performance Measure 4
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.
Source: Adapted the definition for primary care from the American College of Physicians: https://www.acponline.org


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

Performance Measure 4
A location where a medical specialist provider provides clinical specialty care other than genetics.


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

Performance Measure 4
Multidisciplinary clinics that include primary care, mental health, and other specialties (excluding genetics).


Conference Exhibits

Performance Measures 1B

The number of exhibit booths participated in at regional or national conferences.


Conference Presentations and Posters

Performance Measures 1B
Includes: 

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


Continued Support Clinic

Performance Measures 4
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.


Continued Support Provider

Performance Measures 3
“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).


Continuing Medical Education (CME)

Performance Measures 1A and 3
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.


Distance Learning Modules

Performance Measure 1B

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.


ECHO Educational Sessions

Performance Measure 1A

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.


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.


Facilitated connections to a geneticist

Performance Measure 2A and 2B
A genetic appointment facilitated through RGN resources, for example through a telehealth program, or indirectly through outreach and education to primary care or public health. An individual or family directly ‘served’ by the RGN is one for whom a genetic appointment has been facilitated through RGN resources.
Source: NOFO HRSA-17-082: Page 4-footnote 9


Facebook Engagement

Performance Measure 1B
When a user performs actions on your content (examples include: posting, clicking on a link, comment on a post).
Source: https://www.commercialwebservices.com/blog/2017/06/20/crash-course-impressions-reach-and-engagement/


Facebook Impressions

Performance Measure 1B
Impressions are the number of times a post from Facebook page is displayed.
Source: https://www.commercialwebservices.com/blog/2017/06/20/crash-course-impressions-reach-and-engagement/


Facebook Reach

Performance Measure 1B
Reach is the number of people who received impressions from a Page post. A person is only counted as “reach” regardless of how many times they see the post in their feed.
Source: https://www.commercialwebservices.com/blog/2017/06/20/crash-course-impressions-reach-and-engagement/


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 Health Care Services

Performance Measures 2A
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.


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.


Instagram Reach

Performance Measures 1B
The number of unique accounts that saw any of your posts or stories at least once.
Source: https://business.facebook.com/business/help/665980910626369 


LinkedIn Followers

Performance Measures 1B

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

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


LinkedIn Impressions

Performance Measures 1B

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.

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


Listserv

Performance Measures 1B

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.


Live Webinar

Performance Measures 1A
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.
Source: https://www.dictionary.com/browse/webinar


Maintenance of Certification

Performance Measures 1A and 3
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, Judgment and Skills, and Improvement in Medical Practice.
Source:http://www.abmgg.org/moc/moc_progoverview.html


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


New Clinic Site

Performance Measures 4

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


Newly Supported Provider

Performance Measures 3

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.


Newsletters

Performance Measures 1B

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


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.


Other Resources

Performance Measures 1B
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).


Pamphlets

Performance Measures 1B
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.


Patients

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


Press Communications

Performance Measures 1B
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.


Previously Supported Site

Performance Measures 4
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


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



Published Peer-Reviewed Publications

Performance Measures 1B

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.



Regional Genetics Network (RGN)

Performance Measures 1A, 1B, 2, 3, 4, and 5
One of seven entities funded by HRSA under HRSA 17-082.
Source: NOFO HRSA-17-082


RGN-support

Performance Measures 1A, 1B, 2, 3, 4, and 5
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.


Salary Support

Performance Measures 2A

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


Slack Active Users

Performance Measures 1B

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


Select Recorded Webinar

Performance Measures 1A

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.
Sources: HRSA and  https://www.dictionary.com/browse/webinar


Select RGN-Education Events

Performance Measure 1A
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.


Select RGN-Program Activities

Performance Measure 2A
 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.


Service Type

Performance Measure 2
Type of genetic services such as follow-up to NBS, emergency consultation, initial appointment, etc.


Sessions (Google Analytics)

Performance Measure 1B
A session is the period time a user is actively engaged with your website, app, etc.
Source: https://analytics.google.com/analytics/web/#/


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”.


Teleconsultation

Performance Measures 3, 4, and 5
Consultation between a provider and specialist at distance using either store and forward telemedicine or real time videoconferencing. Telephone calls are excluded.
Source: http://thesource.americantelemed.org/resources/telemedicine-glossary


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 education

Performances Measure 1A
Telehealth education is the acquisition of telehealth knowledge through the process of receiving or giving instructions.


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 Followers

Performance Measure 1B
Followers are people who receive your Tweets.
Source: https://help.twitter.com/en/using-twitter/following-faqs#:~:text=Followers%20are%20people%20who%20receive,they%20log%20in%20to%20Twitter


Twitter Impressions

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

Source: Twitter


Users (Google Analytics)

Performance Measure 1B
Users who have initiated at least one session during the date range.
Source: https://analytics.google.com/analytics/web/#/


Web-Based Downloadable Resources

Performance Measure 1B

  • 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

 


Web-Based Other Resources

Performance Measure 1B

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

 


Web-Based Video Resources

Performance Measure 1B

  • 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


Web-Based Website Resources

Performance Measure 1B

  • 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, ReRe, 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

 


Zip Code

Performance Measures 1A, 2A, 2B, 3, 4, and 5
A system of postal codes used by the United States Postal Service The basic format consists of five digits.
Source: https://en.wikipedia.org/wiki/ZIP_Code


Zip Code

Performance Measures 1A, 2, 3, 4, and 5
A system of postal codes used by the United States Postal Service The basic format consists of five digits.
Source: https://en.wikipedia.org/wiki/ZIP_Code


Youtube Views

Performance Measures 1B
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.
Source: 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.