News from ThinkGenetic
FindEHR, shortened for “Finding Individuals Needing Diagnosis through Electronic Health Records,” effectively leverages the potential of big data and artificial intelligence, to assist healthcare providers in solving their patient’s medical mysteries. Each FindEHR proprietary validated algorithm, combs electronic health records and flags at-risk patients, for a specific underlying genetic condition. The flagged records are then screened by a genetic counselor. Healthcare providers are notified and receive real-time education about their patient’s symptoms, genetic risk level, referral, free sponsored-testing options, and any FDA-approved therapies or clinical trials for the specific genetic condition.
While ThinkGenetic started with a patient advocate and a board certified genetic counselor the team has grown to include dozens of contributors, collaborators and advisors from all across the medical community. Genetic counselors, medical geneticists, pharmacists, physicians, and patient advocacy groups are all part of our program. Our solutions and tools are based on content written and reviewed by this specialized community. Published content is referenced to peer reviewed articles for further investigation and to verify content validity to users. Content is re-reviewed for accuracy and relevance regularly as new information in genetics is ever expanding and new disease focused therapies are approved by the FDA frequently. In addition, we continue to test our tools for accuracy and trustworthiness for patients and their healthcare providers through disease specific pilot studies, as well as formalized efficacy studies. 1, 2, 3, 4
ThinkGenetic understands how important the privacy of personal information is to our users and although we are not a HIPAA covered entity, we do protect health information using reasonable security measures. Users are able to access the site without creating a ThinkGenetic account or sharing any personal information. We have put in place technical, physical, and administrative safeguards to protect the Personal Information that we do collect. If a user chooses to create a ThinkGenetic account or share information about their health, we encrypt the transmission of that information or use SSL connections (Secure Socket Layer) technology. Read more about how we secure information here.
We see firsthand that people can wait a long time to receive a genetic diagnosis. While nothing ever replaces the importance of the patient physician relationship, we believe people also have the power within themselves to shorten their diagnostic odyssey too. ThinkGenetic helps individuals harness this power by offering trustworthy information to guide them to the help they need, faster and begin a dialogue with their healthcare team. Undiagnosed individuals, patients, and families are our focus and this sets us apart.
We do not provide medical advice or genetic counseling at ThinkGenetic. We do have consumer focused educational information about genetic conditions, the “Ask the ThinkGenetic counselor” contact option, and a guided diagnostic tool called SymptomMatcher available for free on our website. Each of these tools are designed to help the consumer/patient open the conversation about genetic diagnosis with their healthcare provider and better understand the path to possible diagnosis.
At the highest level, ThinkGenetic’s goal is to help identify individuals at risk of having a genetic condition. Founded by a genetic counselor, a patient advocate, and an IT professional, ThinkGenetic has the rare ability to combine modern machine learning with practical information in genetics. ThinkGenetic prides itself on being a nimble team, being able to customize core services to meet the needs of our clients goals. Contact us to discuss your project needs and we will provide an accurate estimate to partner with you.
References
1The future is now: Technology’s impact on the practice of genetic counseling. Gordon ES, Babu D, Laney DA. Am J Med Genet C Semin Med Genet. 2018 Mar;178(1):15-23. doi: 10.1002/ajmg.c.31599. Epub 2018 Mar 7. PMID: 29512937
2ThinkGenetic: identification of misinformation and educational gaps using an innovative and interactive website MF Simmons, DA Laney – Molecular Genetics and Metabolism, 2017 https://doi.org/10.1016/j.ymgme.2016.11.320
3Determining the disease-specific knowledge gaps in patients, family members, and caregivers living with lysosomal diseases. G Loucopoulos, D Laney, M Simmons, D Babu, K Garber, C Bellcross. Molecular Genetics and Metabolism 126 (2), S95 https://doi.org/10.1016/j.ymgme.2018.12.237
4 ThinkGenetic: A pilot project to create an educational website/application providing increased access to information on accurate natural history, diagnosis, and treatment information with treatable genetic disorders to healthcare providers. DA Laney, M Simmons Molecular Genetics and Metabolism 123 (2), S82 https://doi.org/10.1016/j.ymgme.2017.12.209