Patient portals and personal health records (PHRs) have both received considerable praise for their role in increasing patient engagement. However, distinguishing between the two forms of health IT tools can often be difficult, due to nebulous definitions and overlapping features.
Patient portals give users an online view of their health data, as do PHRs. And by giving patients access to this information, both tools put the patient at the center of care and help incorporate them into their own care team.
But a closer look reveals some subtle differences that are nonetheless important for keeping these different options straight in the minds of patients and providers. Here are some of the key features of each of these technology types and a breakdown of what each term really means.
Tethered personal health records versus patient portals
A tethered PHR, as defined by the ONC, is an online interface tied to an EHR with which patients may view and sometimes interact with their health data.
“The patient accesses the information through a secure portal,” ONC says. “Typically, patients can view information such as lab results, immunization history or due dates for certain screenings. These are called tethered PHRs or connected PHRs. When a PHR is connected to the patient’s legal medical record it is protected under the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule.”
The ONC’s definition of a tethered PHR is very similar to the definition that the agency provides for patient portals:
A patient portal is a secure online website that gives patients convenient 24-hour access to personal health information from anywhere with an Internet connection. Using a secure username and password, patients can view health information such as:
- Recent doctor visits
- Discharge summaries
- Lab results
Some patient portals also allow patients to:
- Exchange secure e-mail with their healthcare teams
- Request prescription refills
- Schedule non-urgent appointments
- Check benefits and coverage
- Update contact information
- Make payments
- Download and complete forms
- View educational materials
ONC appears to use the terms interchangeably, as have other healthcare organizations, including AHIMA.
In a 2015 report, AHIMA researchers indicated that tethered PHRs were no different than portals.
“Tethered PHRs, also known as patient portals, allow patients to access relevant medical information from their provider,” the team wrote in its abstract.
The California Health Care Association likewise considers tethered PHRs and patient portals one in the same, stating the following of patient portals and PHRs:
- Is a secure website through which patients can access a PHR
- Often contains information from a patient's EHR
- Is usually "tethered" to a healthcare organization with applications that build on an EHR
- Enables users to complete forms online, communicate with providers, request prescription refills, review lab results, or schedule medical appointments
- Can enhance patient access and increase administrative efficiency and productivity
Tethered PHRs and patient portals offer several benefits to patients, typically including patient-provider communication through secure messaging capabilities and access to care through online appointment scheduling.
Secure messaging capabilities offer just as many benefits to the provider as they do the patient, allowing the provider to build a relationship with their patients while streamlining their workload.
“Providers are trying to have relationships with these individuals and be able to effectively communicate with that population” using online portals, says Zach Wood, Cerner’s Director and General Manager of Member Engagement.
“Having bi-directional messaging between the patient and provider, not only is convenient on both sides, but it saves an administrative burden as well,” he continued. “And being able to show that health record to the patient enhances the communication lines and provides self-service which is great for the patient and the provider.”
These tools are becoming increasingly necessary for providers looking to improve patient engagement.
According to a report published by AHIMA, patients who access their health information via any form of personal health record can improve their health literacy, giving them the power to make their own health decisions and engage in meaningful conversations with providers.
“Patients who have accessed their medical records have reported a broader knowledge base of their own health concerns, the ability to communicate more effectively with their physicians, initiation of efforts to improve their health, and decreased utilization of healthcare services,” the report says. “PHRs can help make patients aware of their health conditions, which could initiate changes in their healthcare plan.”
Other studies have also indicated that patient data access via PHR or patient portal can help improve outcomes. Patients who can review and revise clinician notes can see better patient safety outcomes, for example.
What is a standalone personal health record?
The ONC defines a standalone PHR as:
“[A system where] patients fill in the information from their own records and memories and the data is stored on the patients’ computers or on the internet. Patients can decide whether to share the information with providers, family members, or anyone else involved in their care. In some cases, information can be downloaded from other sources into the PHR.”
Patient data management is the major distinguishing factor associated with standalone PHRs. The system is entirely patient-controlled, and providers can only view the data when their patients provide them access.
This may help to ensure that sensitive data stays within the user’s control, but managing a standalone PHR can be an immense undertaking for patients. Patients are in charge of aggregating all of the data included in their standalone PHR, as well as coordinating how much data they’re going to share and with whom they will share it.
According to one article published in the Journal of the American Medical Informatics Association, this important patient responsibility can be extremely burdensome.
“An individual's PHR can only be useful if the person understands the importance of maintaining and coordinating health-related documentation and activities with health care providers,” the article authors wrote. “Consumer-related interface, technology, and access issues specific to PHRs are not yet well understood.”
Standalone PHRs also lack the provider interaction that often leads to meaningful patient engagement, a missing link that may have led to the downfall of Google’s and Microsoft’s PHR offerings back in 2012.
Google launched its standalone PHR, Google Health, back in 2008 as health IT began to gain traction through government incentives. However, the company failed to spark consumer interest, and eventually shut down the product on January 1, 2013.
While there were multiple factors that may have led to Google Health’s demise, limited provider interaction with the data and few motivational components were arguably most significant.
“[Google] basically offered a place to store data,” said Adam Bosworth, an original Google Health developer, in a 2012 interview with TechCrunch TV.
“Our data shows people don’t really want a place to store data, per se,” Bosworth continued. “They want to do something fun and engaging. If it’s not fun, if it’s not social, why would they do it? Yes, they want to be healthy, but they need more than that. They need the encouragement and even the pressure of friends. They need the constant pressure, constant reminders.”
More current PHRs have started to address these issues. Although standalone PHRs still require patients to take the initiative to involve their providers with the technology, tethered PHRs/patient portals allow the patient to interact with the provider.
PHRs, patient portals, and interoperability hurdles
Standalone and tethered PHRs offer several of the same patient engagement benefits, and they also suffer from several of the same disadvantages. With all of these data storage options and ongoing industry struggles with interoperability,there are many opportunities for data to become siloed.
For standalone PHRs, interoperability can cause issues for patients who want to offer a provider access to their data. A patient’s PHR may not work well with a provider’s EHR, making it impossible for the provider to access a full view of the patient’s health record. As of 2013, only 60 percent of clinician EHRs could connect to PHRs, according to data from the Workgroup for Electronic Data Interchange.
This problem can also occur with patient portals. A patient may have one portal for their primary care physician, as well as two more for their optometrist and dermatologist. The portals for all three of these providers may not be interoperable, causing a problem if the PCP needs to view the medication history from the dermatologist.
Health IT developers are working on overcoming these interoperability barriers.Some vendors, such as Epic Systems, have made significant progress integrating patient portal information from multiple providers.
“In the past, if you had two MyCharts from two different Epic providers, you’ve had two different MyCharts,” said Epic founder and CEO Judy Faulkner. “You can use a single sign-on for them, but the charts have been separate. And if you have another vendor’s patient portal, you have three different portals, and so on.”
“We have now changed MyChart so that everything is all together no matter how many iterations of the portal you have – or if you have a portal from other vendors,” she said in a 2016 interview with HealthITInteroperability.com. “So you, as the patient, can see all your appointments, no matter where they’re from, and all your meds and everything else all together, which is very neat.”
Both standalone and tethered PHRs present issues with patient-generated health data. Providers express trust issues with PGHD, stating that potentially inaccurate patient data can inform a detrimental treatment plan.
“Providers are wary of the legal implications of PHRs,” said researchers in the aforementioned JAMIA article. “For example, courts might apply negligence standards in cases where practitioners rely on inaccurate patient-entered PHR information to make suboptimal decisions about care.”
According to one recent study on PGHD and PHR integration, health policymakers need to create a standardized system for using the data. This will make PGHD use more manageable at the point of care and mitigate some concerns regarding liability for PGHD use. It could also allow providers more time to verify data accuracy before using it to determine treatment.
“Designers should focus on easy-to-use interfaces, automated [PGHD] collection, and communicating PGHD only when directly relevant to a given patient visit,” the researchers concluded. “Finally, policymakers and clinical leaders may need to better demonstrate clear clinical usefulness or provide other incentives for practices to routinely incorporate [PGHD] in EHRs.”
While patient portals and PHRs do have their differences, they both still drive users towards the overall goal of improving patient engagement. Determining which technology is better for achieving better patient engagement may be in the eye of the beholder. Different patients and providers have different preferences, making them predisposed to preferring one system over another.
By understanding the differences between patient portals and PHRs, as well as patient preferences, providers can better decide which tool could be a better fit for fostering patient engagement.