Healthcare Data Ownership: Turning Patients into Proactive Consumers


The healthcare data explosion has prompted thorny debates over data ownership and access. Obviously, patients have a vested interest in having access to their own personal health history, but the data holds value for other stakeholders as well. For example, providers need a complete patient picture to provide personalized care, and researchers want to aggregate and analyze data to establish trends and predictive insights.

One of the major transformations in healthcare is around the patient as a consumer. Patients increasingly want to have influence over their own care, as seen with the growth of smart health watches and telehealth, to cite two examples.

The demand for greater control, customization and convenience is especially true among younger generations. After all, Millennials and those in Generation Z are growing up in a tech-savvy digital world. The inability to easily access and control their own data is foreign to them. This will force the hand of stakeholders previously unaccustomed to readily sharing individual health data.

The Benefits of Patient-Owned Data

There are two categories of healthcare data: Data repositories – a patient’s historical data used to conduct research and establish trends – and streaming data, which is real-time data used to make clinical care decisions.

Some members of the industry worry about the slippery slope that could result from giving patients too much power by owning their data repositories. The question is not whether patients should own their personal data, but whether they are able to fully understand what they are looking at, as well as the accountability to know when and what to share with each provider.

However, just as we all have access to our Social Security number and understand that we must be careful when sharing it, patients can be trusted to protect their own health record, and only divulge information when it is in their best interest. In fact, 80 percent of patients reported that their online medical records were easy to understand and useful for monitoring their health.

In a consumer-oriented healthcare environment, patients are continuously growing more empowered – whether deciding how and where to receive care, or becoming well-informed about their own condition. This development should be celebrated, not feared. Only good things come from a better understanding of one’s own health.

The Patient Record of the Future and Population Health Management

Several years ago, it was taboo to ask your physician to see your own health record. Today, if you visit a doctor or go to the hospital, you can almost guarantee your doctor will enter your medical record into an electronic health record (EHR), which you can subsequently view and download from a dedicated web portal.

Yet, while patients today already have unprecedented views of their own health data, the healthcare provider still has legal rights and duties related to the possession and protection of that health record. Imagine a future in which patients own their entire data repository to enable consumer-based sharing of one’s record, rather than leaving a health system in charge of sharing the data when needed. Providers would continue to be the experts on the ground, making diagnoses and providing a recommended treatment plan.

Ultimately, a patient-centered approach to data can move the needle on population health management by helping patients to manage their own health and meaningfully engage with their providers. Having a copy of their health record readily accessible on a smart phone allows patients to become more engaged – and engaged patients tend to be healthier. After all, no one knows your body better than you!