How Patient Health Data Access Drives Patient Engagement

Without health data access, patients cannot fully review their personal health information and cannot be fully engaged in their care.

Source: Thinkstock

As the healthcare industry continues to focus on improving patient engagement, experts regularly discuss the importance of patient health data access, saying that it’s imperative to boosting patient involvement in care.

But thinking about patient health data access can be complicated. Few patients actually have stacks of files in their houses detailing their every care encounter. Most patients leave their health data to their providers, despite the industry’s changing attitude that it’s important that patients have access to their data.

Why do patients really need access to their medical records? And how do they gain access? Below, we answer those questions and break down the basics of patient health data access.

Why do patients need to see their health data?

It is important to address why patients really need health data access. After all, aren’t their physicians the ones who truly need to be in the know?

Under older healthcare models that may have been true, but as the healthcare industry transitions into patient-centered care models, it’s important that providers empower patients with their own health data and use that to foster patient engagement.

Research out of the Office of the National Coordinator shows that this data is actually very useful to patients.

Source: ONC

Other studies show that patients like to see their health records so they can better understand their treatment plans. When they have a thorough understanding, they are more likely to adhere to those treatment plans.

Promoting patient health data access also has its logistical advantages. Providers have much going on during a patient visit between current patient needs, remembering their past medical history, and the long to-do list physicians often have.

Having patients who are well-versed in their health data helps providers stay on top of things.

“So who better for patient safety than the patients themselves to own that data to help to keep themselves safe?” said Susan Wolver, MD, associate professor of internal medicine at VCU Health, in an interview with “There’s so many things that I have to do during a visit, it’s like a juggling act. And I want the patients involved in that juggling act to help keep them safe.”

When a patient is able to work as a part of the care coordination team, they serve as yet another person who can help ensure patient safety and manage the complexities of the treatment plan.

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How can patients access their health data?

While there are multiple ways by which patients can access their health data, patient portals have recently been the most talked about.

Patient portals have become quite the buzzword throughout the healthcare industry, with industry leaders regularly promoting their use. These EHR-tethered websites are a hub for all things patient-centered, and help them stay well-engaged in their care between visits.

Patient portals accomplish this mostly by giving patients access to their health data. Because they’re tied to the EHR, patients can get a look at their lab results, health histories, discharge summaries, and immunizations.

Providers or hospital administrators can also send patients their health data, either in hard copy or electronic form. When sending a hard copy, providers must arrange a convenient time for patients to pick up the data, or mail the data to the patient.

Providers can also send electronic copies of health data to patients, and recent ONC data shows that this is becoming increasingly commonplace. As of 2014, over 50 percent of patients could view, download, or transmit their health data.

Source: ONC

As of late, many healthcare professionals have been working toward creating a better and more efficient method by which they can do this, including DirectTrust’s recently launched Partnership for Patients Program (P4PP), which better facilitates health information (HIE) exchange between patients and providers.

The program will ideally alleviate some of the cost and electronic barriers keeping patients from securely transmitting their health data between themselves and their providers by implementing a system that works similarly to, but more securely than, email.

According to DirectTrust’s president and CEO David C. Kibbe, MD, MBA, this kind of solution is exactly what the industry needed in order to boost patient health data access.

“The need for patients and consumers to take charge of their health information, communicate with their providers about their health and be free to move their health information anywhere they choose has never been greater,” Kibbe said in a press release. “This, of course, means individuals must have access to their personal health information stored in their providers' EHRs and other health IT systems, and have that access electronically and digitally.”

How does access work under HIPAA?

Although patient health data access is often touted as an integral part of patient engagement, patient rights can grow somewhat foggy with regard to privacy and security. Because HIPAA has strict privacy rules, it can sometimes be unclear what rights patients have with regard to health data access.

However, under HIPAA, patients have full access to their health data. Barring very limited exceptions, patients are able to access any and all PHI that their providers possess, and providers can never deny patients access to their health data for having unpaid medical bills.

HIPAA also allows patients to share their health data with third party entities, like family or caregivers, in order to fully engage them in a treatment plan. Parents of minors, for example, have access to patient health data, and HIPAA also allows data transmission between providers and adult children of elderly parents.

Despite the fact that HIPAA facilitates patient rights to their health data, many patients still go without accessing their information.

According to a blog post by ONC’s Karen DeSalvo and the Office for Civil Rights’ Jocelyn Samuels, patients aren’t accessing their health data because they aren’t aware of their rights under HIPAA.

As a result, ONC has recently released a patient-facing video series educating them on their rights to access their health data and answering specific questions they may have. Through this educational tool, ONC hopes to see more patients access their health data by whatever means they choose in order to foster better patient engagement.

“Providing individuals with easy access to their health information empowers them to be more in control of decisions regarding their health and well-being,” DeSalvo and Samuels wrote. “Individuals with access to their health information are better able to monitor chronic conditions, adhere to treatment plans, find and fix errors, and directly contribute their information to research.”

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Do patients find health data access useful?

In addition to understanding how providers value patient data access, industry experts must also understand how the patient values it. After all, patient-centered care – the very thing boosting health data access is intended to support – is all about the patient.

In investigations into patient preferences for patient portals and other methods for health data access, researchers have regularly found positive results.

At VCU Health, for example, providers have found that their patients enjoy being able to keep track of their own health using a patient portal.

“We actually just put out a survey within our patient portal and we have nearly 1,500 responses, so I know what patients are thinking about the portal from their end, and they truly love it as a patient engagement tool,” Dr. Susan Wolver said in an interview.

“In fact, 80 percent of people said that it helps them take better care of themselves,” she continued. “So that’s unbelievable. Eighty-five percent of the people who knew their notes were there are actually looking at their notes.”

Wolver also said that many of her patients like accessing their health data through the portal because they can more easily remember what their physicians told them during their previous visit. This is also a provider perk.

“There’s great data that patients forget sometimes half of what they’ve been told in the visit. And when you deal with very complicated patients like I do, how we ever thought that patients understood our instructions is silly,” Wolver explained. “Now this gives them the opportunity to go back and actually read our notes.”

Other research indicates the same. In a study of patients at the Department of Veteran’s Affairs, many patients reported that they reviewed their physician notes before their next appointment to ensure they fully understood where their health stood.

“Often I get very stressed at a doctor’s appointment, don’t remember half of what’s going on and I could go on to eVet and get my information and go, ‘ok, we’re not in sync with this’…that helped a great deal,” one study participant reported.

Of course, there are some downsides. Some patients who have access to physician notes, for example, sometimes report that they are exacerbated or offended by what providers have recorded.

“In some instances, patients expressed discomfort about the language in notes, errors or inconsistencies in note content, or strain on patient-provider dialogue,” the VA study found. “At the same time, several patients voiced contrary views, opening up discussions about pros and cons of having their information available.”

However, most patients and providers find that the positives outweigh the negatives.

Studies about the OpenNotes program, which gives patient access to physician notes in addition to their health data, have found that nearly 90 percent of patients and providers find patient access to health data a positive thing for healthcare.

Provided that kind of support, it is vital that providers fully understand their patients’ rights for health data access and determine the best course of action to facilitate that kind of access.

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This article was originally published on June 6, 2016.


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