Can industry outsiders empower patients through data?

There is a belief that by enabling direct access and control over their own health data, patients will be in a better position to drive their health and healthcare.

As I discussed earlier in this series, industry outsiders are looking for ways to improve our problematic healthcare system by focusing on data as a key leverage point for making improvements.

Could their focus on data ultimately empower patients?

Access to data could lead to better care

With more information, patients are expected to engage and make better-informed decisions. With data, patients will see the value of engaging in healthful behaviors and regular health screenings. Ultimately, this will empower patients to make better (i.e., less expensive) healthcare decisions.

Tech giants Apple and Google have both undertaken major healthcare initiatives aimed at improving patient access to their data.

Patients carry their health data on their smartphones

At the beginning of the year, Apple announced significant updates to its Health app. Based on the FHIR (Fast Healthcare Interoperability Resources) standard, this app makes it possible for patients and their caregivers to see health records from multiple providers on a single screen. The thought is that this app will empower patients to make better health decision by giving them easy access to their health data whenever they want and wherever they are.

Patient data in the cloud made accessible for collaboration

Google is taking a big data approach to patient data with its Google Cloud for Healthcare. With the stated goal of “organizing the world’s information and making it universally accessible and useful” Google is building a secure platform based on open standards. From this platform, healthcare partners are able to apply AI and ML to patient data with the aim of improving care and outcomes.

Every healthcare initiative by industry outsiders takes into account the patient and is aimed, at least in part, at improving the patient’s experience and outcomes. The hope is that these initiatives will motivate patients to take on new behaviors that result in better health and, ultimately, lower healthcare costs systemwide.

But barriers remain

Remaking healthcare is not as simple as putting all a patient’s data in one place and giving them an app to access it. A number of barriers remain.

Data security and patient privacy need to be addressed for any data sharing initiative to succeed, especially one that is tied to increased patient engagement. The fear of a data breach affects both healthcare institutions and patients. A recent Black Book survey found that 57% of people surveyed were concerned about the privacy protections built into the technology used by their doctors, hospital and other healthcare organizations. More importantly, 87% of patients were unwilling to share all of their healthcare information with providers due to security and privacy concerns.

Patient ownership of health data also needs to be addressed. There is a debate over just how much detail in healthcare records is useful to patients. The paternalistic culture of traditional healthcare feels that patients are unlikely to understand everything that is in their health record and therefore doesn’t need access to all of it. Patients and their advocates argue that the patient is in the best position to decide what health data is most useful and should be free to decide. How to present patient data needs to be sussed out to create systems that allow patients the flexibility to access the data most useful to them.

A new model of interoperability is needed

If healthcare in the US is to be remade so that every player has access to the data they need for patient care to be delivered successfully then a new approach to interoperability is needed. This new approach needs to be frictionless for patients, providers, payers, and regulators providing a free and open data exchange delivered in a secure, standards-compliant, yet dynamic environment.

Redox has built a cloud-based software solution that enables just this kind of interoperability. Built on the needs of those consuming the data, Redox’s data exchange solution acts as an abstraction level above source systems, like EHRs, enabling data to be seamlessly exchanged with any authorized vendor or internally-developed application.

We are well on our way

It’s apparent that remaking healthcare through data is incredibly complex, even when industry outsiders limit their efforts to a single aspect of healthcare. The tools of data analytics and information processing offer the hope of improving the efficiency and effectiveness of healthcare delivery. And by making their data easily accessible patients are empowered to make more informed health decision. All these technological developments have put us well on our way to realizing these improvements.