Researchers in late March announced a stunning breakthrough that promises to transform medical science and revolutionize how clinicians treat patients with chronic, debilitating and often fatal diseases: For the first time ever, a complete sequence of the human genome has been generated.
This may be news to those who thought scientists had completed the first human genome in 2003. But the Human Genome Project was able to sequence only 92% of the human genome at the time. The remaining 8% proved elusive, until the Telomere to Telomere (T2T) consortium was able to close the gaps by discovering more than 2 million additional variants in the human genome.
The ability to analyze the complete genome sequence will significantly add to our knowledge of chromosomes and open new lines of research to help answer questions about how chromosomes properly segregate and divide as well as the role genetics plays in diseases. From this knowledge, medical researchers will be able to develop novel and individualized treatments for patients, taking precision medicine and personalized medicine from the lab to clinical settings.
The value of Labs
Individualized treatments based on a patient’s genetics will improve outcomes and ensure greater health equity. For example, before clinicians embark on a course of treatment for a patient with cancer, they want to know as much as possible about how that individual will respond to specific therapies and dosages to maximize the patient’s safety.
This is where research and commercial laboratories play an indispensable role. Data generated by labs are the driving factor in medical decision-making, with 70% of clinical decisions today being informed by lab results. Labs are where genetic testing is done to screen for medical conditions in newborns, to determine whether a patient has an inherited condition, to profile cancer tumors, and more. Labs also conduct pharmacogenomic testing to identify the safest and most effective drugs and dosages for individual patients.
Further, up to 70% of patient information residing in electronic medical records consists of lab data. Without lab data, modern medicine as we know it simply wouldn’t exist because clinicians and researchers would lack their most vital source of information and insights into individual patients and populations.
The importance of quality data
It is imperative, then, that Admit, Discharge and Transfer (ADT) and aggregated lab data can be shared across a healthcare network. This is one of the reasons why the Michigan Health Information Network (MiHIN) joined the National ADT Hub Network (NAHN).
Launched in 2021 by United States QHIN (USQHIN), an alternative nationwide health information network, NAHN’s mission is to foster collaboration between vendors, health information exchanges, labs, imaging centers, health systems, government agencies, and health insurers nationwide.
It’s a formidable challenge but sharing lab data is essential if we are to realize the benefits of precision medicine and personalized medicine. Only through attaining a holistic view of the patient can we increase transparency and allow patients to take a more active role in their care. Success collaboration will require the ability of stakeholders to rise above competitive needs and interoperability issues.
The benefits of lab data sharing, however, can be undermined if the data isn’t of the highest possible quality, free of duplications and missing or conflicting patient information. Flawed lab data can have a negative impact on patient outcomes and costs, as well as the patient experience.
Without being able to accurately match patients to the data gathered about them in EHRs – where patient record duplication error rates alone can exceed 20% – clinicians must make decisions based on incorrect patient data. Labs, meanwhile, lose money through operational inefficiencies, increased payment denials and declining patient collections if their data is flawed. The cascading negative effects of poor patient matching can result in worse clinical outcomes, inaccurate billing and bureaucratic delays that can cause healthcare consumers to abandon their current providers.
To complicate matters, the explosive growth of lab testing in response to COVID-19 has brought many new players into the patient data pipeline. Given that the healthcare industry has failed to determine how to secure, share and organize this growing amount of data, the surge in demand for high-quality lab data is more reason why we need a secure and interoperable “hub” for patient data.
Master Patient Index and common keys
MiHIN has been successfully using a “common key service” (CKS) to facilitate sharing of patient data among members. The CKS connects with a Master Patient Index (MPI) to manage information about patients and reduce duplicate entries. It then assigns a unique key that is stored and attached to the patient in the MPI and shared with all systems exchanging information about that patient. Each system can link their respective medical record number to the same common key and then include the common key when exchanging information about the patient.
It should be emphasized that for CKS to work, healthcare stakeholders must deploy modern MPI technology that accurately matches patients before CKS can be applied to each patient and medical record. Again, though, health data quality (HDQ) plays a critical role in ensuring lab data is aggregated and matched accurately at the patient level. HDQ and the ability of healthcare stakeholders to easily and securely share lab data not only improves clinical outcomes, it produces tangible financial benefits. It is important, therefore, that labs and imaging centers choose a technology partner with an advanced MPI platform and patient-matching capabilities. Our partnership with 4medica® has allowed us to dramatically reduce our duplication rates and achieve data quality.
Health Data Quality will accelerate the healthcare revolution
The full sequencing of a human genome will accelerate our ability to leverage genomics and pharmacogenomics in pursuit of treatments to prevent, mitigate and cure diseases such as cancer, heart disease, Alzheimer’s, multiple sclerosis, cystic fibrosis and other conditions. Precision medicine and personalized medicine will help us learn and apply that knowledge faster.
The next step is to scale the use of precision medicine and personalized medicine to help prevent and treat diseases and other medical conditions for millions of Americans. HDQ will play an integral role in this healthcare revolution, while enabling labs to dramatically increase the clinical and financial value of their data.
About the Author
Tim Pletcher is president and CEO of Velatura Public Benefit Corporation and executive director of Michigan Health Information Network Shared Services.