Democratizing data: The growing need for patient-centric access and transparency

Healthcare organizations must improve access to data because patients and caregivers are bearing more responsibility in advocating for needed care.

For most of us, getting access to the data we need about our own lives is simple. If we want to understand our financial information, we log onto our bank’s website to see our past statements, payment history or account information. If we want a view of how we consume our entertainment, we can log into our Netflix account to see what we’ve watched, along with customized recommendations around what we should watch based on our history and preferences.

However, that same easy access doesn’t apply for what is arguably our most important personal data: our health information.

Health information is both complex and highly regulated, for good reason. It’s sensitive and not something we’d want just anyone to be able to access. At the same time, we can’t use that as an excuse to deny people easy access to information about their own health. It shouldn’t be simpler to pull years-old bank statements than it is to pull lab results from last week.

Patients deserve ready access to their own health information. It’s time to accelerate the push to give it to them.

The need for access is rising

For better or worse, patients today are the ones in charge of making sure they get the care they need. With clinician burnout and a shortage of available physicians, patients must push harder than ever to access the care they need. Even when patients get to the clinic, many providers don’t have enough time to properly care for the increasingly high volume and complexity of patients, so interactions are shorter, and that places more onus on the patient or family members for follow up. 

The bottom line is that patients and their caregivers increasingly must advocate for care, and they need access to as much information about their health as possible. Unfortunately, our current healthcare system doesn’t make that easy.

Patients often need to track down information from multiple hospitals, clinics and electronic health record (EHR) systems that don’t always communicate with each other. As a result, one person’s health information can exist in a number of siloes, and it can be a nightmare to bring this information together. The patient must not only secure, aggregate and digest this information themselves, but try to ensure that their next provider gets it at the right time, because many providers don’t exchange data with each other.

All of this can be extremely challenging and time consuming, especially for people with multiple or complex conditions, or family caregivers who might be monitoring this information for themselves while also tracking or coordinating care for a loved one. Add in data-sharing restrictions and hard-to-navigate systems that many people currently face from the organizations that hold their data, and an already difficult task is made even more frustrating.

If patients – and, by extension, their doctors and other clinicians – don’t have access to their health information, they can lose the opportunity to detect problems early and implement simple, low-cost interventions. As a result, health problems may fester and become more severe, leading to worse outcomes or necessitating more burdensome, costly treatments – and this can contribute to the high costs and poor outcomes that plague American healthcare.

The road to individual access services

Several steps have been taken to improve patient access in recent months. New federal rules took full effect in October that require healthcare organizations to give patients full access to their health information in a digital format without delays. While this represents a major milestone in theory, some organizations have been unable or unwilling to fully comply, leaving patients without the access they need.

These organizations can claim it will take time for them to comply with the rules because they don’t have the solutions in place to give patients quick and easy access to their information. They are also not incentivized to comply because the requirements aren’t being fully enforced pending final federal rule making and the commitment of enforcement resources.

We must ensure organizations that create and maintain health data are properly monitored to ensure they’re following the new rules and have solutions to help patients access their health information easily and securely. That includes tools for identity management, data management and privacy protection, all of which are essential for enabling individual access.

A public-private partnership

With such a large-scale shift affecting hundreds of millions of patients and thousands of healthcare organizations, public and private institutions will play key roles in following and enforcing the new rules and establishing a new status quo for individual access. In particular, one program will be vital to achieving this shift.

Earlier this year, the Department of Health and Human Services approved the applications of an initial set of Qualified Health Information Networks (QHINs) for onboarding under the Trusted Exchange Framework and Common Agreement (TEFCA). The QHINs will help establish a universal floor for interoperability, as part of a nationwide framework for health information exchange. By connecting healthcare organizations via these networks, patients will be able to access their health data more easily and securely from a variety of sources.

The establishment and implementation of TEFCA is one important development that must be part of a larger shift, one in which public and private sector institutions collaborate to make easy access, exchange and use of health information the default.

The old adage, “You have nothing without your health,” may still ring true, but with so much data flowing through the system, it may be just as valid to say that “you have nothing with your health information.”

It’s time that we stop leaving individuals in the dark. We must start doing more to ensure institutions that maintain healthcare data have and use the tools they need to safely and securely share it with the people who are most entitled to it – the patients.

Steven Lane, MD, MPH, is chief medical officer at Health Gorilla.

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