Healthcare’s gradual climb to a digitized system has caused a rapid shift in priorities. In the health data sector, developments like interoperability, electronic health records (EHRs), data integration, and more, have become prominent features of the landscape — simplifying collaborative processes across healthcare structures.
But while these advancements continue to thrive, it’s important to keep sight of the main object of any healthcare equation: the patient. In a recent survey of 1000 patients, around 60% considered access to their data inadequate. What’s more, 15% of participants were unsure if they even had this access, with two-thirds unaware of where their data is stored. By contrast, nearly 9 in 10 U.S. office-based physicians adopted one electronic health record in 2021, while 78% used a certified EHR in practice.
To close this gap, applications, patient portals, and other tools are promoting patient access to valuable health data. Through technology, a patient, caregiver, or other loved one can simply swipe across a screen for a complete, 360° view of their medical history.
Patient records tell a story of documented encounters and interactions with healthcare professionals. A peek into a patient’s medical history contains standard details about demographics, allergy and vaccination information, medication, progress notes, consultations, imaging reports, and more. For anyone familiar with medical records, there are three main types used by patients and doctors. These are personal health records (PHR), electronic health records (EHR), and electronic medical records (EMRs)
PHRs are medical documents manned and supervised by a patient or someone authorized to do so on their behalf. These documents may be stored on paper, across electronic devices, but more often than not — are available over the internet. These records may be stand-alone or tethered to a healthcare provider’s electronic health record system.
Stand-alone PHRs permit the patient to take the driver’s seat in their care, by inputting information to their records stored in a personal computer or over the internet. It’s up to the patient to decide if this information stays for their eyes only, or shared with providers, loved ones, and anyone else involved in their care.
On the other hand, patients may access records stored in a hospital, physician's office, or other healthcare setting via tethered PHRs. This is made possible through a secure portal. Patients considering PHRs have options like Dossia, Health Manager, and MyPHR.
EHRs are a digital documentation of patient health information. These records include medical history, vital signs, diagnoses, medication history, immunization records, relevant insurance coverage information, and even data collected from telehealth platforms and devices.
What makes EHRs impressive is the ease of exchanging patient information among healthcare providers. EHRs are a core component for care coordination, ensuring that everyone involved in a patient’s care-physicians, laboratories, pharmacies, and so on, have access to identical relevant information to promote care. This collaboration is made possible through software like Metriport’s Medical API, which supports data access and retrieval from HIEs and EHRs in the US.
Think of EMRs as a digital version of a paper chart. This means you can expect to find patient demographics, clinical notes, medication records, test results, treatment plans, and more in this record.
While these features may sound similar to the role played by EHRs, EMRs stand out for one reason — the information contained in these structures are for use within the healthcare setting alone, and are not designed to be shared outside a healthcare practice. Providers may need to print out and manually deliver information contained in EMR to players requiring it for care continuity.
EMRs have the primary purpose of assisting providers with diagnosing and treating patients.
For decades, the healthcare status quo relegated patients to silent participants in matters affecting their healthcare. Recognizing that direct engagement and participation with health data could improve patient outcomes, laws like the Health Insurance Portability and Accountability Act (HIPAA) of 1996 set the ball rolling for patient access to health data. This Act ensured patients could access paper copies of their records at minimum cost, with options like patient portals to view their medical history.
Others like the Office of the National Coordinator Cures Act introduced the Blue Button Initiative for patients to access and download online health information, plus measures like prohibiting information blocking to encourage patients to access medical history via tools like APIs and health applications. The following are common patient tools to encourage patient engagement in healthcare:
AthenaOne provides an extensive suite of technology solutions. Created by AthenaHealth, this cloud-based platform supports a patient portal where patients can ask questions, schedule appointments, view test results, and aggregate other valuable information from a concerned healthcare provider.
Patients can access their medical history and other relevant health information through its EHR system. This platform is accessible via smartphones, tablets, and laptops.
iPhone users have a powerhouse application in Apple Health. This app automatically counts steps and running distances, with additional features like cycle tracking, mindfulness, sleep, vitals, and other data. Importantly, this application adopts interoperability standards like SMART and FHIR to collate health records from multiple sources and personally generated data.
Using Epic’s patient portal MyChart, patients can access electronic health records within the widespread Epic EHR system. Added to accessing their diagnoses, medications, lab results, visit summaries, and other information, patients using this portal can also securely message their providers about concerns or questions they might have about their care.
Google Fit is a fitness tracking tool that can provide valuable information to complete a patient's health record. By operating an open API, developers can integrate the health information collected into their applications and services.
AllegianceMD is a powerhouse for patient management. This software tool provides an EHR, self-check-in options, and a portal where patients can update their health information and review previous entries by providers. Patients can also schedule appointments and reach out with relevant care-based questions.
For fellow open-source evangelists, Fasten Health is a unique OSS electronic medical record aggregator. Designed to integrate with 100,000's of sources, Fasten is a self-hosted solution that allows individuals to access their medical history without a middleman having access to their data. At Metriport, we're huge fans of what Fasten is doing, and encourage fellow OSS enthusiasts and privacy freaks like ourselves to give it a try.
Healthcare delivery has much to gain from encouraging patient participation in health management.
Well-informed patients have the following benefits when access to health information is unfettered:
In 2022, The United States patient engagement solutions market was valued at $5.87 billion and is projected to expand as more people recognize the importance of a controlling role in health data. Like other rapidly changing healthcare segments, patient engagement has a few kinks to iron out in areas like data security, fragmented systems, and technical barriers.
But with more supportive government initiatives and improved patient education on the value of data access, it’s only a matter of time before a wider net of patients realizes the full potential for optimizing well-being.