Why patient control over their own data is key to health equity


The ability of healthcare providers, payers, and other stakeholders to share data is critical to improving patient outcomes, managing costs, and improving healthcare equity. Unfortunately, the lack of interoperability continues to keep clinical data and damage reports trapped in silos scattered across patient care routes.

Recognizing the need for patients, clinicians, and health plans to freely access relevant digital data, the 21stNS Century Cures Act contains Provisions prohibiting data blocking, in which health IT systems are intended to make authorized access or exchange of electronic health information difficult or impossible.

Health disparities stemming from social determinants of health (SDOH) such as race, ethnicity and socioeconomic status have also attracted increasing attention from health professionals and policy makers in recent years. The Biden government targets health inequalities by creating Efforts Medicaid to transform while the American Medical Association (AMA) in May revealed a strategic plan to reduce structural racism in health care and promote equity in health care.

Patients in vulnerable populations have historically had less access to quality care, while many have no health insurance. That injustice was exposed during the pandemic: data Updated in June 2021 by the Centers for Disease Control and Prevention shows that black patients infected with Covid-19 are 2.9 times more likely to be hospitalized than white Covid patients, while Hispanic patients are 2.8 times more likely are. Too many Americans are denied the benefits of timely, coordinated care because their providers and health plans simply are unable to share information. This leads to delays in diagnoses, application approvals, and treatments that can lead to poor patient outcomes and even tragedy. In addition, it leads to duplication of laboratory tests and other routine clinical procedures, administrative inefficiencies, and overuse of care services (e.g. affects us all.

Interoperability is essential for the exchange of data between providers and payers. But that’s not all: It is also imperative that Patient easy and secure access to all of your digital health data. This “data transparency” ensures that patients can control their health data themselves.

In addition, data transparency can increase health equity for those population groups who do not have access to basic services and may not have health insurance. Many people who are uninsured or even have their own doctor get their first aid in emergency rooms (ERs). This usually includes diagnostic tests and then some type of treatment. The problem arises when that patient later goes to a doctor or other emergency room and clinicians are either not informed of previous tests and results or cannot remember what they were. At best, this means another test round that would otherwise have been avoided with data transparency.

In the worst case, patients’ inability to access and control their data can have dire consequences. Take the case of a woman who goes to an emergency room with a possible miscarriage and undergoes a test to check the levels of human chorionic gonadopotropin (HCG), the pregnancy hormone, in her blood. The HCG test must be repeated every two days so that doctors can compare the HCG levels. If this patient is going from doctor to doctor and emergency room to emergency room, and clinicians have no way of getting those previous HCG test results, they cannot make an immediate decision about what that patient actually needs.

The danger is when the patient has an ectopic pregnancy rather than a miscarriage. As a practicing gynecologist, I have seen this often. A patient shows up in the emergency room with a ruptured ectopic pregnancy and a blood-streaked abdomen that requires emergency surgery. Complete data transparency would allow providers to determine whether the patient had a miscarriage or an ectopic pregnancy, which requires an entirely different clinical management. The same patient may also have an ultrasound that needs to be compared to another a few days or a week later. It’s the same process: clinicians need to be able to track growth and change as this information feeds into their care management.

As a doctor, it’s frustrating to know that with the right data, you can create a better treatment plan. When I see patients with an ectopic rupture in the emergency room, 80% of the time they’ve been to a doctor or two who couldn’t see previous tests and said, we may wait to see them Have the test results back. ”And we do that in the emergency room as an emergency operation, which represents an unnecessary risk and avoidable costs for the patient. Data transparency could prompt earlier interventions before disease becomes life-threatening and significantly improve outcomes.

Diagnostic test results are probably the most important piece of information that should be easily conveyed. However, it is very difficult for patients to track and access diagnostic information. And that is the most important information that providers use to make decisions.

But imagine if patients had access to this information through an app. They could make the data available to their providers by requesting them to log in and view them. Clinicians would then have enough information to make informed treatment decisions immediately instead of waiting. In the case of our patient, who may have an ectopic pregnancy, such an app could literally help prevent potentially fatal internal bleeding.

However, an app that allows patients to access data from just one provider would not solve the problem of data transparency. What is really needed is the ability for patients to aggregate data from a variety of sources into one app. All patient data in one app should be the gold standard for data transparency. A dozen apps for a dozen different providers is not enough. Even if the patient gives a provider permission to access their data, that provider will not log into each of these apps during their 15 to 20-minute patient visit.

Clinicians need actionable data, and they need it in a discreet format so that a computer system can view it and tell a doctor whether a patient’s white blood cells have increased or whether their hemoglobin has decreased since their previous visit. This type of data transparency enables doctors to make evidence-based judgments about treatment that form the basis of value-based care. And by making it easier for patients without health insurance or access to quality care to manage their data, data transparency can reduce health inequalities.

All of this becomes possible as soon as information is available for aggregation. I expect healthcare consumers will soon have the same choice of health data apps as they do on social media platforms. It will take a combination of laws to protect the privacy of patient data by regulating communication between apps and innovation and the free market, but these apps are coming. And they will put control of health data where it belongs – with the patients.

Photo: metamorworks, Getty Images

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