4 Key Use Cases for Patient Data Access, Patient Portals

Patient engagement, empowerment

Fundamentally, patient data access is about improving overall patient engagement and empowerment in care. Since meaningful use mandated patient portal adoption, the logic has dictated that a more informed patient would be a more educated and thus more engaged patient.

Healthcare providers who have offered patient portal and clinical note access have seen a difference in their patients, data has shown. Investigations into the OpenNotes movement, which says every patient have digital access to their provider notes, has shown that patients come in better prepared for visits and with meaningful questions about their care when they can see their data.

In March 2020, OpenNotes published clinician survey data stating that clinicians who share open clinical notes notice a positive difference in their patients.

Eighteen percent of providers said their patients mentioned the notes during a later clinical encounter, while 14 percent said their patients had called the office with a question about clinical notes, the researchers wrote in JAMA Network Open.

It’s those gains in patient engagement and activation that are convincing even the most reticent of clinicians to offer broader patient data access via OpenNotes. In May 2021, research in the Journal of General Internal Medicine showed that 44 percent of clinicians who previously had a negative view of OpenNotes shifted to have a positive view.

More clinicians said they thought their patients were taking better care of themselves after implementing patient access to clinician notes (30 percent pre-implementation and 50 percent post); clinicians also said patients were better prepared for their visits.

As healthcare reimbursement becomes increasingly based in value, it will be important for patients to become empowered via patient data access. That activation will make it easier for the patient to take care of herself between visits, ideally tamping down on expensive acute episodes and allowing organizations to deliver on a value-based care bottom line.

Family caregiver engagement

But it’s not just about the patient having access to medical data. It’s also important that family caregivers, like a guardian or an adult child caring for an aging parent, have data access, as well.

After all, data shows that family caregiver engagement can yield good outcomes like lower hospital readmission rates.

Part of that will require good family caregiver engagement and education, starting with ample patient data access. However, HIPAA privacy rules pose a bit of a conundrum.

In terms of parents and guardians of pediatric patients, HIPAA does allow for fairly seamless caregiver data access. The situation becomes stickier when patients age into adolescence, but most states and organizations are working out strategies for proxy patient portal access that allow for some patient privacy and autonomy as well as family member engagement.

When looking at family engagement when the patient is an adult, that data access becomes more complicated. In some instances, organizations continue to set up proxy patient portals that can be helpful for adult children caring for an ailing parent. But still, access to those proxy patient portals is quite limited and has spurred on a trend of password sharing, which can have privacy and security consequences.

The insurgence of patient data access, particularly mobile patient data access, is presenting an opportunity to bypass that issue. Mobile patient portals and mobile personal health records are often enabled by application programming interfaces (APIs) that let patients download their own medical information and then transmit that information to a loved one.

That process admittedly puts the onus on the patient and/or family caregiver, who need both the digital health literacy and time to actually do the data transmitting. For older adults or individuals who are extremely sick, perfecting the proxy patient portal or even appointing a legal healthcare proxy may be more helpful for family engagement.

Care coordination

In addition to sharing medical data with family members or caregivers, patient data access—paired with interoperability via APIs—makes it easier for patients to be the arbiters of care coordination. Via an app-based API, patients are able to send their medical records from their patient portal or personal health record over to another healthcare provider.

In an ideal world this patient-led care coordination would admittedly not be necessary; EHRs would be interoperable enough to simply transmit the data between disparate providers without the patient heading the charge.

But right now, digital patient data access and API use is filling in that gap, according to JP Pollak, one of the brains behind the Commons Project. The Commons Project helmed CommonHealth, an Android-based personal health records app that lets users download their patient portals, aggregate them in a single record, and transmit select data to others, including providers.

“There are scholarly papers showing that people have better patient engagement portability between providers,” Pollak said in a November 2020 interview. “Certainly, we're at a time when you, in spite of the health information exchange and some of the other platforms, it's still sadly possible to show up somewhere and not have your health data with you.”

CommonHealth helps enable that kind of care coordination, as does Apple Health Records, a similar app embedded in iPhones.

“As a physician who has seen individuals try to be effective healthcare consumers and stewards of their information, it's challenging,” Bill Hanson, MD, now chief information officer and vice president at Penn Medicine, said in an interview with PatientEngagementHIT.

Hanson and his team at Penn Medicine were early Apple Health Records adopters and found it helped streamline data portability between patient and other providers.

“The common question providers ask is, ‘What medications are you on?’” Hanson said. “A patient would pull an index card out of their wallet, much creased, the ink smeared, and they've written down in their scratchy handwriting what they think they're taking, or some approximation of that.”

Those types of makeshift patient records aren’t exactly useful for providers, who know an accurate medication list can be the difference between a positive care experience or a serious patient safety event.

“They're trying to be a responsible patient and provide information to the healthcare provider,” Hanson acknowledged. “It's tough, but there's no good way to make that information portable. The Apple effort seemed like something that would be a big step in that direction.”

Access to, sharing of medical history

Finally, ample patient data access makes it easier for individuals to share select information with outside entities. This has been particularly influenced by the COVID-19 pandemic, which presented a need to share medical history, like COVID-19 test results or vaccination records.

To be clear, this need existed long before the coronavirus came ashore in the US. For example, youth sports have usually required record of an annual physical exam, while schools required proof of certain childhood shots.

But since the pandemic, this issue has become more widespread, with institutions ranging from restaurants to gyms to airlines asking for this kind of information and nearly everyone has to comply.

Patients need an easy and convenient way to do this, according to Pollak.

“COVID has certainly shined a light on the need for very specific kinds of healthcare data,” Pollak predicted back in that November 2020 interview. “So the COVID testing and this notion that getting COVID tests to fly on a plane from New York to Honolulu is a requirement is certainly a driver of people wanting access to health information. A similar situation may arise when we have vaccines.”

Pollak and his team have largely spearheaded the initiative to make medical history sharing easier, at least for the COVID-19 vaccine. Launched during the height of the vaccine rollout, the Vaccine Credentialing Initiative (VCI) created a tool to let providers, vaccine administrators, public health agencies, EHR companies, and other relevant groups create a digital vaccine credential system (DVCS).

“Everybody's getting CDC cards, and you can get your immunization record by downloading it onto your phone from your health system or opening it up and doing it in the portal,” Pollak later said during a May 2021 phone call about VCI’s work. “But those records weren't going to be verifiable to the extent that you'd be able to use them for international travel.”

Sharing of medical history may have been a tipping point for patient data access. This key use case has illuminated why patient data access is so important, even for those who are generally well and do not have a chronic illness. Patient data access can make it easier for individuals to move throughout their health and wellness journeys more informed, and ultimately more empowered.