A personal health record (PHR) is an electronic summary of health information that a patient maintains control of themselves, as opposed to their healthcare provider. The information contained in a PHR can be self-reported, generated by their providers or a combination of the two. The type of data included in a PHR is not standardized, but a typical record might include the following information:
PHRs have existed since the 1990s. But it took more than a decade for the technology to advance sufficiently to drive commercial interest in their development.
In 2007, companies such as Microsoft and Google began offering PHR products, though neither is available today. Dossia, a web-based framework for PHRs, was launched in 2008 by a consortium of companies, including Walmart and AT&T.
The PHR landscape has undergone significant transformation in recent years, driven by emerging technologies and the unprecedented challenges of the COVID-19 pandemic.
The maturation of artificial intelligence and machine learning has enabled sophisticated predictive analytics to be integrated into personal health management. This technology enables more accurate forecasting of health trends and personalized healthcare recommendations.
Simultaneously, blockchain technology can be used to enhance the security of PHR data. Its robust encryption and decentralized nature offer new ways to protect sensitive health information from breaches and unauthorized access.
Furthermore, the COVID-19 pandemic accelerated adoption and expansion of PHRs. This period saw the rapid integration of vaccination records into PHRs, providing individuals with easy access to their COVID-19 vaccination status -- a crucial element during the height of the pandemic. In addition, the rise of telehealth services, necessitated by lockdowns and social distancing measures, became an integral part of PHRs. This integration not only facilitated remote care, but also ensured continuity of care and remote patient monitoring during times when traditional face-to-face encounters were challenging.
These technological advancements and the pandemic's impact have shaped the role and functionality of PHRs, making them more vital and versatile tools in modern healthcare management.
As PHR software continues to evolve in response to new trends and technologies, future products are expected to incorporate genomics data, wearable health technology and personalized medicine approaches.
The General Data Protection Regulation (GDPR), implemented in the European Union (EU) in May 2018, has had a significant impact on PHRs in terms of how personal health data is managed, protected and shared.
GDPR imposes strict rules on data protection and privacy that ensure PHR providers in the EU, or those dealing with EU citizens' data, maintain high standards of data security. This includes implementing robust measures to protect against data breaches and unauthorized access.
Under GDPR, individuals must give explicit consent for their health data to be collected, processed and stored in a PHR. PHR providers are required to clearly inform users about how their data will be used, who will have access to it and for what purpose. This transparency empowers users to have more control over their personal health information.
GDPR mandates that only the data necessary for the intended purpose should be collected and processed. This principle of data minimization ensures PHRs don't become repositories of excessive, irrelevant personal health information.
GDPR requires PHR providers to demonstrate compliance with its principles. This includes maintaining detailed records of data processing activities, conducting data protection impact assessments for high-risk processing and, in some cases, appointing a data protection officer. Noncompliance can result in significant penalties.
PHRs are classified as standalone or tethered. Standalone PHRs are managed by patients, who input their own data and decide how it should be shared. They can sometimes accept data from external sources.
Tethered PHRs are linked to a specific healthcare organization's electronic health record (EHR) system and accessed through secure portals. There is debate over whether tethered PHRs qualify as true PHRs.
Although PHRs share many similarities with EHRs, the terms are not interchangeable. An EHR is a digital record consisting of clinician-collected notes and information, designed to be shared with other healthcare providers.
Most notably, an EHR platform is entirely controlled and maintained by the healthcare provider or healthcare organization. While a PHR contains similar information, patients themselves retain control of the record.
PHRs provide several benefits to healthcare professionals and patients, including the following:
Despite the potential benefits, there are several challenges facing PHRs, including the following:
The PHR market has evolved over the years as vendors have either consolidated or exited the space. But several products remain available.
Today, popular PHR software includes Apple's Health app, WebMD's Personal Health Record, Oracle Cerner's HealtheLife and Epic's MyChart.
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05 Feb 2024