In today's healthcare landscape, patient portals have emerged as essential tools for enabling true patient engagement, improving access to health information, and fostering better communication between patients and physicians. However, patient portals are not without challenges; just ask your friendly CMIO. From addressing trust issues to sharing sensitive information, healthcare organizations must navigate a complex terrain to ensure that portals truly benefit the entire care team, including the patient, their family, and clinicians.
A significant challenge facing the healthcare industry is the declining trust patients have in their physicians and hospitals. According to recent studies, many patients feel disconnected from their healthcare providers, often citing concerns about transparency, privacy, and impersonal interactions. Just last week, researchers reported that trust in physicians and healthcare systems fell from 71.5% in 2020 to 40.1% this year. How can we start to rebuild this trust? I detailed some thoughts earlier this year, focusing on design principles such as transparency and predictability. In this article, let’s focus on the patient portal itself.
Portals are connected to the electronic health record (EHR) and allow patients (and, importantly, their family as surrogates) to view their health information, send messages to their clinicians, schedule visits, and even pay bills. A newer ability of patient portals allows patients to download various data to share with third parties or apps. How can this feature set promote trust?
One of the most sensitive aspects of patient portals is the sharing of progress notes and lab results, especially when they contain bad news. Patients receiving unsettling information through a portal may experience anxiety and confusion without immediate support from their healthcare team (e.g., getting an imaging report or biopsy results that become available on a Saturday evening). The Washington Post recently wrote about this problem, identifying horrific examples of patients getting devastating news, while also interviewing people who are incredibly appreciative of getting their data without waiting on their doctors. I should call out that sharing data fairly immediately with patients is not optional; federal law requires it.
How can physicians promote a trusting relationship with the double-edged sword of radical transparency? Scholars suggest several concepts that can help. First and foremost, be proactive and practice pre-release counseling: ensure patients know that bad news might be shared via the portal, even before the doctor becomes aware of it. Given that knowledge, some patients may choose to turn off or ignore result notifications. Ideally, EHR vendors create functionality to support patients who want to get data from their doctors and nowhere else. Further, physicians should be involved with and informed about how their patient portal works. Finally, be certain that lab results and progress notes include easy-to-understand explanations and context to help patients interpret the information correctly.
Allowing patients to download their health data for use in third-party apps is crucial for several reasons with respect to trust. It promotes interoperability, enables patients to use innovative health management tools, and supports personalized care plans. When patients can take their health data wherever they go, they can make continuity of care across different providers and systems much easier. Additionally, access to specific and discrete health data allows patients to utilize newer services and apps that may not be available at their current healthcare system. A trusting relationship requires that patients do not feel that their own data are being held hostage, either incidentally by an outdated EHR or purposefully by a hospital that may fear competition.
Family members often play a crucial role in patient care, particularly for elderly or chronically ill patients. Ensuring they have access to relevant health information can enhance care coordination and support, and hence, trust. There are two ways proxies (i.e., family and friends) can gain access to patient portals: the easy way (sharing the patient’s username and password) and the difficult way (following the rules and jumping through the healthcare system’s hoops to ensure privacy). We know that while it is not a good idea, patients share their access information regularly. A study of three academic children’s hospitals identified that an estimated 64% to 76% of portal accounts were accessed by family members (likely, parents and guardians). Earlier this year, researchers showed that it’s not easy to follow the rules, though: of 24 attempts to “officially” grant access to proxies (i.e., follow the rules), only 15 were successful. This is no way to engender trust. Healthcare IT leadership and software vendors must ensure that it is easy to do the right thing by creating reasonable processes to offer proxy access.
Patient portals hold the potential to transform healthcare by fostering transparency, enhancing communication, and empowering patients. However, realizing this potential requires addressing key challenges such as trust, sensitive information sharing, data portability, family access, and clear communication. By adopting thoughtful strategies, healthcare organizations can ensure that patient portals are truly beneficial tools that enhance the patient experience and improve health outcomes.