Future of Healthcare: Patient-Owned Data
In 2018, Alira Health enhanced its value proposition to better serve clients and ensure that we have a positive impact on patients’ lives. We looked at where we could effectively combine our services with technology, asking “What technologies do we need to better enable our services?” We analyzed the market to understand how technology was used in life sciences and concluded that it was mainly used to collect data – clinical evidence, real world evidence, and other types of data.
We then looked for gaps in the healthcare technology market. But even beyond that, we looked for trends that would allow Alira Health to become a pioneer in using technology for a different purpose. In particular, we wanted to enrich clinical research and development and improve patient access to data.
Our competition focused on collecting data from healthcare providers (hospitals, physicians, etc.) and value-chain players such as pharmacies, as well as from payers. The problem was – and still is – that the data lacked interoperability: firms couldn’t connect the data coming from these disparate sources back to an individual patient. Without that longitudinal patient data, researchers and trial sponsors can’t understand the patient journey, which prevents real insight into what medical problems need to be addressed and what treatments will be of use.
Think about oncology patients. First, they might be diagnosed and treated locally. Then, they may be sent to a specialist center, such as a cancer center, to receive specific therapies. These patients need their existing data to be shared with the specialists. Next, patients might want to share the data from their cancer center with a nutritionist who is helping them to manage supportive care oncology for treating the consequences of radiation or chemotherapy. Patients end up with too many providers who don’t communicate with each other. This lack of communication among healthcare providers compromises patient care. Additionally, a pharmacy or perhaps multiple pharmacies, will have data about patients’ medications, and payers will have data on the treatments they received and how they were covered by insurance. But there is no one true source of all the data about a particular patient, and patients themselves cannot access the data.
The truth is that the only person who really cares about having access to all their information in one place is the patient. Unfortunately, the current healthcare system does not make this easy for patients; in fact, it can be a hardship. Often, patients have to physically pick up copies of records or CDs of test results in person at a healthcare provider and take it to another. Sometimes they are charged fees. Or they are flatly denied access to doctors’ notes. In reality, providers have no interest or incentive to share a patient’s data with each other or with the patient.
However, a revolution in patient data is upon us at long last. In December 2016, the 21st Century Cures Act was signed into law. One of the main goals of the Act was to prevent the blocking of electronic health information (EHI). The details have taken several years to sort out, but on October 6, 2022, federal rules went into effect requiring providers to make EHI available for access, exchange, and use. STAT called it “data liberation day” and said that patients in the United States can celebrate this as “the day they got their health data back.”
Today, providers can no longer say that they can’t give the patient their health data. They can’t set up barriers such as charging fees for copies or making the patient come in person to pick up physical records. The issue providers face now is how to make the data accessible digitally. Not every electronic medical records (EMR) system has the capability to provide downloadable data, but they need to find a way.
As a patient, I no longer have to wait for Hospital A to give my data to Hospital B, and I don’t need to jump through their hoops to get the data myself. They have to give it to me, and I’ll store it where I want to – in an app on my phone, in the cloud, wherever I want. The owner of patient information is no longer providers, but patients. Patients are now enabled to truly be their own best advocates, not merely passive participants in their own healthcare.
This is why Alira Health decided, years ago, that we were not going to invest in technologies that gather data from providers or payers. We said, “We’re going to partner with the patient.” The future we envisioned then is now coming to fruition. This major paradigm shift puts data in the hands of patients, and we are ready for it.
When patients realize the value of downloading, controlling, and sharing their data, Alira Health is ready with our platform, Health Storylines™, which allows them to track their health data and upload their clinical information. Having all this data in one place will address the patient as a whole. Let’s not underestimate the fact that a patient can be treated clinically, but still feel unwell. We capture that qualitative data from patients, which in combination with the clinical data that they provide (because they now have access to it) powerfully informs the development of new drugs and devices.
At Alira Health, we are betting on patients. We’re betting on their ability to understand the value of their data, present their own clinical history to providers, and be their own best advocate. We’re also betting on their willingness to help solve medical problems. We are a reliable, trustworthy partner that will securely and safely use the information that patients share for real world evidence purposes, for clinical purposes, and to help address medical conditions affecting other people, perhaps even conditions that they feel connected to because of their own suffering or the suffering of family and friends.
We educate patients about why they should use our platform for their data. We do not own their data – they own their data. Instead, we package their data for life sciences use, resulting in the democratization of life sciences research.
For pharmaceutical companies that think that clinical data must come from a clinical environment, we provide every aspect of the patient journey to inform the direction of research and development. This change in medical records regulations has opened up a huge opportunity, and Alira Health is well positioned to help our clients take advantage of it.
At Alira Health, we are ready for this revolutionary new world in which patients own their data and are empowered not only to improve their own health, but also to help improve the health of others.