There are currently significant challenges regarding access to clinical geneticists and genetic counselors because of the limited number of genetic providers, and because they are most often located in academic health centers. Research demonstrates that the use of telehealth in genetics (telegenetics) can reduce barriers and improve patient access to genetic services with high levels of patient satisfaction. There are numerous existing resources to support telegenetics and telehealth efforts.
NYMAC Telegenetics Resources
NYMAC offers one-on-one “Telegenetics Navigation” for people interested in telegenetics, including in-depth telegenetics program planning support. We are also offering telegenetics training for genetics providers. We will continue the previously established interactive Telegenetics Community of Practice (TCOP) group as well. See details below, and the NYMAC telegenetics resources flyer for a summary of these programs.
- NYMAC Telegenetics Navigation services are offered to those interested in telegenetics, providing in-depth telegenetics program planning support. These services are open to genetics providers within the NYMAC region, as well as referring providers and patients. Resources and services include:
- One-on-one technical assistance, support, and resource identification for people with questions about telegenetics
- Available support for telegenetics program planning, with a detailed planning guide with resources, templates, and a planning checklist
- Collaboration with the regional Telehealth Resource Centers (TRCs)
- Email for more information about Telegenetics Navigation
- The NYMAC Telegenetics Program Planning Toolkit is available through the Mid-Atlantic Telehealth Resource Center. It outlines the necessary steps for launching a telegenetics program, with resources and tools for each step. https://telegenetics.matrc.org/
- The NYMAC Factsheet on Technology for Telegenetics includes an overview of telegenetics technology models, key terms, technology tips and resources, and a sample telegenetics technology plan.
- NYMAC Telegenetics Training
- NYMAC sponsors a virtual telegenetics training program. Online training modules include topics such as policy/legal issues, technology, etiquette, and billing. The one-day live online session includes hands-on technology training, instruction, and role playing. CEUs and CME are available. Email for more information.
- NYMAC established the Telegenetics Community of Practice (TCOP) in 2016 to support telegenetics in the region. The TCOP provides a structure to connect those interested in telegenetics so that they may learn from, collaborate with, and mentor each other. The TCOP is a group of over 175 providers who practice, have experience with, or are interested in telegenetics. They meet periodically via webinars and conference calls to discuss experiences and strategies for using telegenetics. The TCOP sends email notifications on key telehealth topics. In addition, presentation slides, webinars, and other resources are shared on the NYMAC website. Past webinars have covered topics including billing and reimbursement, technology options, and administration. Email for more information.
- Previous TCOP webinars are available here:
- Introduction to Telegenetics(link is external)
- Business planning and reimbursement(link is external)
- Technical and Administrative Considerations for Telegenetics(link is external)
- Technology options(link is external)
Other Telehealth and Telegenetics Resources
Resources from the Telehealth Resource Centers
- Federally Funded Telehealth Resource Centers (TRCs)(link is external) have been established to provide assistance, education and information to organizations and individuals who are actively providing or interested in providing medical care at a distance. Their charter from the Office for Advancement of Telehealth is to assist in expanding the availability of health care to underserved populations. The National Consortium of Telehealth Resource Centers provides resources including:
- Links to regional TRCs
- Policy and technology resources
- Webinars, including the Telehealth Hack Series, which provides CEU/CME credits to attendees at no cost
- A list of tools for providers or healthcare centers building telehealth programs
- The Mid-Atlantic Telehealth Resource Center (MATRC)(link is external) is the TRC providing resources to Pennsylvania, Virginia, West Virginia, Kentucky, North Carolina, New Jersey, Delaware, and Maryland. They link to resources created by member states, and offer resources such as:
- A telehealth forum
- An annual telehealth summit
- Toolkits for various telehealth topics including COVID-19, remote patient monitoring, and telebehavioral health
- Northeast Telehealth Resource Center (NETRC)(link is external) is the TRC serving Maine, New Hampshire, Massachusetts, Connecticut, Rhode Island, Vermont, and New Jersey. They have created resources such as:
- A resource library which can be filtered by specialty, telehealth modality, year of publication, state, topic, type of resource, author, and keyword search
- COVID-19 telehealth resources, including a list of toolkits and information guides, policy updates, current payer policies, patient and provider training resources, and relevant literature
- The National Telehealth Technology Assessment Resource Center (TTAC)(link is external) offers services for technology assessment, to assist telehealth programs in choosing appropriate technologies. Resources include:
- Innovation watch
- Technology showcase
- The Center for Connected Health Policy (CCHP)(link is external) is a national nonprofit under the Public Health Institute, which was designated the National Telehealth Policy Resource Center in 2012. It provides information about telehealth policies, with resources including:
- Current state laws and reimbursement policies
- Legislation and regulation tracking
- COVID-19 telehealth coverage policies and state actions
Resources from the Regional Genetics Networks
- The National Coordinating Center (NCC) for the Regional Genetic Networks(link is external)coordinates all 7 regional genetics networks in the country, including NYMAC. They offer resources such as:
- A telegenetics workgroup
- A research repository searchable by topic, intended audience, and by keyword search
- The Midwest Genetics Network (MGN)(link is external) has created a series of videos for patients and families called “An Introduction to Health Care through Telemedicine.” The videos are available in both English and Spanish. They were created to give patients and their families some background on telemedicine, what a telemedicine appointment looks like, and how to meet their goals for an appointment within the telemedicine format.
- Western States Regional Genetics Network (WSRGN)(link is external) has created a list of telehealth resources for providers implementing telehealth, including best practices, tools and information for setting up telehealth, legal and policy issues, HIPAA information specific to telehealth, and consent forms.
- The American Telemedicine Association (ATA)(link is external) is a non-profit association based in Washington, D.C. with a membership network of more than 10,000 industry leaders and healthcare professionals. The ATA is a leading telehealth association helping to transform healthcare by improving the quality, equity and affordability of healthcare throughout the world. The ATA offers resources including:
- Practice guidelines
- A forum for providers working via telehealth
- Links to recent publications relating to telehealth
- The HRSA Office for the Advancement of Telehealth (OAT)(link is external) promotes the use of telehealth technologies for health care delivery, education, and health information services. Active programs include:
- Telehealth Network Grant Program (TNGP)
- Telehealth Resource Center Program (TRC)
- Telehealth Centers of Excellence (COE)
- HRSA Rural Health Resource Guide(link is external), under the Federal Office of Rural Health Policy, includes federal resources and projects such as:
- Rural Action Plan
- Health IT Telehealth Start-Up and Resource Guide
- Rural Community Health Gateway
- Rural Health Research Gateway
- FCC Rural Health Care Program
In New York State Medicaid MCOs can submit updated Telehealth Innovation Plans (TIP) if they wish to qualify for bonus points for their 2018 Quality Incentive award(link is external). Information regarding the 2017 Quality Incentive(link is external) is available.