Opinion: Lack of data sharing continues to hamper health development

We know that the right medical data, used in a meaningful way, can ensure that patients receive the right care at the right time, help avoid unnecessary duplication of care, and prevent medical errors. Data can also help reduce readmission rates and, as a result, health care costs. Despite this evidence of significant results, communities often get stuck on the first step: no data sharing.

Where is the bottleneck? Every hospital, clinic and other healthcare facility generates a huge amount of data. However, a recent survey showed that less than 4 out of 10 health systems successfully exchange data with other systems. In addition, just over two-thirds of US hospital and health system technical leaders communicate effectively across their organizations. One obstacle is the lack of clear guidance from management. Healthcare leaders need to clearly communicate to their teams not only the need for data connectivity, but also the use cases and value for internal and external sharing and learning from raw information. Data is critical to the goals of every healthcare leader, but is it treated as such?

Readmissions, for example, are one of the most costly issues for our healthcare system. The Centers for Medicare and Medicaid Services report that nearly one in five Medicare beneficiaries undergo readmissions within 30 days, costing more than $26 billion a year—to the detriment of patients, health care providers, and taxpayers. A full 20% of readmissions can be prevented in patients with three or more chronic conditions if they are contacted by a healthcare professional within 14 days of discharge. This cycle can be closed with the right processes, starting with ensuring health care providers are alerted and receiving hospital stay and discharge information.

The Inland Empire Foundation for Medical Care ACO, of which I am the CEO, has done important work towards these goals. We are one of the largest PPO networks in Southern California, responsible for the care of over 9,200 Medicare patients, many of whom are chronically ill. We established the Foundation Accountable Care Network, a Medicare Co-Savings Program, ACO, and have made significant progress in our efforts to reduce readmissions (39.4% reduction in post-discharge readmissions) by using data we get from Manifest MedEx The not-for-profit nationwide health data network.

IEFMC receives notification of admission, discharge, transfer (ADT) and longitudinal medical records, as well as real-time clinical and claims data. Our ACO practices are immediately alerted when a patient is seen in the ER, admitted or discharged from the hospital, allowing care teams to respond quickly and initiate post-discharge follow-up within seven days.

FACN receives an average of 190 notifications per month from Manifest MedEx for its patient population of 9,200 patients, and because of this data, the number of follow-up visits within seven days of discharge is extremely high. Of the total cohort of patients admitted to hospital in 2021, 68.6% were examined within seven days of hospital discharge, while 31.4% were not. For those who weren’t, the readmission rate was 25.5%, in stark contrast to the readmission rate for those who were, at just 15.6%.

Care teams need to see patient stories to determine who needs help the most. Clinical and claims data are equally important for creating a complete picture of a patient’s health and medical history, as well as for monitoring how they use healthcare services. They need to know when a patient is seen in the hospital and when they are sent home. Our ACO practitioners know which patients have had more than four ED visits in the past six months and can target those patients for interventions. The data also identifies patients with multiple chronic conditions and need for additional treatment, which has significantly reduced the cost per beneficiary per year.

We need to broaden the types of data we are looking at, especially from a health equity perspective. General health information must include accurate data on race and ethnicity, as well as data on sexual orientation and gender identity (SOGI) for all patients. Most hospitals collect data on race and ethnicity; North Carolina is doing this successfully, reaching 94% documentation by race and ethnicity for COVID-19 vaccinations after implementing strict data collection requirements. However, SOGI country data is inconsistent, and many healthcare IT platforms have not yet adopted consistent, interoperable data fields and value sets to collect this information. The United States Core Data for Interoperability (USCDI) process, supported by the Department of Health and Human Services’ Office of the National Health Information Technology Coordinator, is helping to address this issue, and we should all support efforts to streamline and interoperate SOGI data.

Health leaders should subscribe to this and encourage data sharing. We have data and we know how to use it to make it valuable for everyone. It’s time to eliminate the bottleneck.

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