It’s not a debate anymore: Patients have every right to control their health information, and recent developments show how this trend is expanding. From the 21st Century Cures Act to Apple’s recent update that will allow patients to share personal health information directly into their medical records, consumers have the power to do more with their data than ever before. And with that power comes many benefits—for both patients and businesses.
Today, patients are no longer handcuffed to referrals. Instead, they have a universe of information available at their fingertips, and they use what they’ve learned to shop around and make the most informed decisions about their health. From locations to reviews to cost, patients have the power to customize their healthcare experience. This transformation has created a consumer mentality toward healthcare.
And an integral part of this consumer mentality extends to health data ownership. Having access to health records gives patients another layer of data and control that they can use to optimize their healthcare even further as they use a multitude of apps. While patients may not always have the background to make sense of all of the information contained in their health records, data ownership makes it easier for them to share with the providers and apps of their choice to more quickly and efficiently procure the care they need.
Beyond their personal health, patients will have greater control over where their data goes and what their data is used for—such as in clinical trials or for public health purposes (COVID-19 data sharing, for example). In some instances, they may be compensated for sharing their health data because those who need it will now need to gain their authorization.
Patients having access to and control of their data is giving them something they don’t necessarily have currently: long-term historical context. Most providers are only required to keep patient data for 7-10 years, which means critical health information simply won’t be available after a prescribed period of time. When patients have control, they can keep their data for as long as they choose. With innovative artificial intelligence (AI) technology, they will have access to deeper, richer insights with each passing year.
It’s easy to see how patients benefit from patient health data ownership in terms of their healthcare, but what may not be as evident is how it positively impacts what I like to call “businesses beyond care”—companies that aren’t healthcare providers but rely on medical records to conduct business. Such industries include life insurance underwriters, personal injury law firms, and clinical researchers.
These industries benefit from fast access to health records, but the reality is that the process can be tedious and time-consuming. When patients own their data, record retrieval businesses can go directly to patients, who can quickly and easily grant access to their data. By going straight to the source, these businesses are positioned to drastically reduce administrative hours—time that they can then reallocate toward more practical purposes. And much like patients who benefit from AI technologies, businesses beyond care also benefit from data contextualization. For example, think of a law firm conducting a class-action lawsuit that requires a mass influx of data to try the case. Once that information is in their possession, a wealth of insights is available if they have the tools to analyze it.
We are entering a new age of healthcare, where data can no longer be hidden and guarded by providers. When responsibly accessed and analyzed, this data can improve care outcomes while creating many benefits beyond care. In this new environment, when patients own their medical records, they act as the key to unlocking their value.