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4 Pros and Cons of Digital Patient Health Data Access

Healthcare experts are currently weighing the benefits and drawbacks of broad patient health data access.

Patient health data access is a generally accepted patient engagement strategy that helps to empower patients through improved health literacy and integration into the care team.

Healthcare providers are acting on patient data access, with nearly 90 percent offering their patients access through a patient portal or digital health record. Providers are supplementing their patient portals with expansive campaigns to drive widespread patient adoption and patient activation on the tool.

However, not all healthcare professionals are entirely on board with broad patient health data access. Some have concerns about the strain this access may put on their patient-provider relationships, or the confusion that complicated medical terminology can cause patients.

Although patient portals are getting used by providers across the country, there are still some major pros and cons experts must understand to fully assess the current state of patient data access.

Pro: Patients enjoy digital data access

Since patient portals have seen higher promotion as a result of meaningful use and MACRA requirements, patients have largely grown to appreciate these tools. Viewing their own medical records can be empowering for patients and help them assume a larger role in their own care.

A 2017 study published in the American Journal of Managed Care found that 98 percent of patients enjoyed receiving digital alerts that their lab results arrived. All patients said they preferred viewing these results in a secure email or via the patient portal.

Thirty percent of these patients said that accessing their lab results via secure email or portal helps prevent them from missing important health information.

A separate study published in the Journal of Medical Internet Research found that patients enjoy accessing their medical records for four central reasons:

  • Being able to confirm and remember care plans
  • Quicker access to test results
  • Ability to share health information with family members and other relevant clinicians
  • Offering clinician note feedback

Improving patient satisfaction and the patient experience is a key imperative in healthcare, and patient portals and data access can help drive that goal. Healthcare providers should consider their patients’ preferences for accessing their medical information when forming opinions about open data access.

Con: Complicated health info causes concern for patients, docs

Some healthcare professionals are concerned that unfiltered medical records or clinician notes may cause confusion for patients who are not necessarily well-versed in healthcare terminology. Decoding these notes might create more issues than it resolves, some doctors have said.

When UC Health adopted an OpenNotes-like philosophy that called for increased patient access to clinician notes, the system’s Chief Medical Information Officer CT Lin, MD, FACP, said he saw considerable pushback from providers with patient concerns.

“We had seven doctors in this cardiology practice, four of whom said ‘I don’t know if this is a good idea,’” Lin recalled in an interview. “Progress notes are for doctors.”

Other doctors fear that with confusion comes an influx of patient communication. Although strong patient-provider communication is often seen as a positive thing, too many emails can disrupt physician workflows.

“I’ve heard of other colleagues who have had patients who maybe sort of abuse it, and write a little too many emails back and forth, and are just – you know, it’s one question after the next after the next after the next,” one physician explained in a study published in the American Journal of Managed Care.

Some clinicians have asserted that doctors should have more faith in their patients and trust that patients can understand the notes in the patient portal and on their medical records. Strong patient education strategies, reviewing complicated lab results together, and simplifying some clinician notes may be helpful in supporting patient understanding.

Pro: Patients can review info for medical errors

Patient access to health data and medical records is an important tactic for patient safety. Patients who view their medical records can serve as a second set of eyes to ensure that medical histories and other information are accurate.

For example, patients can review medication notes and flag a dosage error. In this case, clinicians are still in charge of reviewing and approving that flag, but it is helpful for clinicians to receive feedback from patients who are familiar with their own healthcare.

A recent OpenNotes pilot proved the effectiveness of patients reviewing notes for clinical accuracy. OpenNotes researchers introduced a patient-facing annotation tool to 41 clinicians who were already using OpenNotes.

Over 6,000 patients viewed their medical information between August 2014 and August 2015, and 8 percent of those patients used the feedback function.

Of that 8 percent of patients, 23 percent flagged a potential medical record error.

Sixty-four percent of feedback was marked as a confirmed or possible error, and 57 percent resulted in eventual medical record revisions.

This tool showed the importance of patients reviewing their medical records, if not for better patient education then for patient safety.

“Our findings add to a growing literature suggesting that patients can help identify mistakes,” said lead author Sigall Bell, MD. “We were struck that nearly all patients and care partners in the study found the feedback tool valuable. What that indicates to us is that patients are eager to help their health care teams ‘get it right.’”

Con: Clinician notes raise patient-provider relationship concerns

Even when clinicians agree on the clinical benefits of patient data access, some still harbor a more interpersonal concern: what if patients are offended by clinician notes? What if they become worried by certain lab findings?

Clinicians use their notes to make certain observations about their patients, and in some cases those observations may not be positive. Doctors may use their notes as an opportunity to make an observation about non-compliance, which may not be received positively by patients later reviewing the notes.

This was another significant concern at UC Health, Lin said.

“Do you want patients to call us with terminology questions? Will they be offended when we call them obese? Or if we say they’re smoking or they smelled like smoke? This is going to be terrible,’” Lin recalled his colleagues saying.

Providers have shared similar sentiments about OpenNotes and patient portal access, a separate study published in the Journal of the American Medical Association found.

“My notes are for me,” Steven Malkin, MD, said in the JAMA article. “If I knew a patient was going to read them, I would write them differently.”

To many providers’ credit, patients do sometimes report a strain on the patient-provider relationship due to data and clinical note access, the JAMA article reported. However, many patients also appreciate their providers’ frankness and view it as a form of patient motivation.

Healthcare organizations are developing strategies to help patients cope with the stress of some medical data.

At MD Anderson Cancer Center and Mayo Clinic, providers withhold lab results from patients for a short period of time to ensure the provider can review the data before the patient sees it, the JAMA article said. This allows providers to prepare for how patients will react to the information.

And as Malkin explained, some doctors write their clinical notes differently than they did before patients had access. While clinicians should not withhold information, they can use their interpersonal skills to ensure patients receive comments well.

Although patient data access may still be a debatable topic, it is increasingly becoming an imperative in the healthcare industry. Many payment models hinge on providers offering patients access to their medical records. Value-based care models rely on patients being active participants in their own care, and that begins with accessing their own medical records.

As the debate over data access continues, providers will benefit from developing strategies to overcome their concerns rather than avoiding patient data access.

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