Navigating the Reality of Timely Access to Health Information

When a patient trusts their care team, they are more likely to be actively involved in their health care. Being transparent and providing immediate access to their health information can go a long way in building that trust.

With a view toward increased transparency, Cleveland Clinic was an early adopter of automatically releasing most test results — after a short delay — to the electronic patient portal. This delay allowed care teams to discuss the results and plan next steps with patients over the phone and in a more personal manner prior to their release on the portal.

Is this what patients want?

To gain better insight and explore opportunities for further transparency, a 2017 market research study surveyed patients’ thoughts, attitudes and opinions regarding the immediate release of test results to the MyChart patient portal.

The objectives of the study included:

• Identifying what methods were preferable, acceptable and unacceptable to first receive results of increasingly serious tests.
• Determining whether these preferences and acceptability change with a delay in receiving the results.
• Understanding patients’ emotional responses to the immediate release of test results.

Based on 8,030 MyChart user responses, the study concluded that the release of results online is acceptable for less serious tests (i.e., lipids, strep throat) but unfavorable for more consequential tests (i.e., cancer).

“Back in 2017, there was limited research on the early release of test results to online patient portals, such as MyChart,” says co-author Lori Posk, MD, Medical Director, Clinical Informatics and Center Director for Population Health, Cleveland Clinic Indian River. “Learning about patients’ preferences, especially for emotionally sensitive information, helped us select which tests were initially appropriate for rapid release and how to talk to our patients about their viewing options.”

Read the study: Informed or anxious: patient preferences for release of test results of increasing sensitivity on electronic patient portals

Transition from delayed to immediate release

In 2020, Cleveland Clinic implemented the immediate release of most test results in response to the 21st Century Cures Act final ruling, with certain exceptions. Study data guided decision-making in regards to delays and exclusions.

Pathology and cytology results are now released after a five calendar day delay. Additionally, providers have the option to delay advanced imaging results for five calendar days at the point of ordering the test. Lastly, the following tests are excluded from automatic release: STI, HIV, pregnancy for teens (age 13-17), HIV for Florida patients (per state Law) and genetics.

Dr. Posk adds, “While we were well-positioned before the final ruling, knowing our patients’ preferences from the 2017 study showed us how important open and honest conversations are when ordering tests.”

Through a robust education campaign, providers learned how to inform patients about the immediate release of test results and their viewing options. Talking points, frequently asked questions and patient materials emphasized that patients can choose to review their results before speaking with their provider.

Empowered, informed partners

Patients now must consider how to proceed knowing the potential emotional impact of viewing results before connecting with their care team.

“Patients today expect immediate notification,” says Dr. Posk. “From the clinical side, we need to connect quickly with patients when there are abnormal findings. Timely access from a clinical team member is imperative to reduce patient anxiety. When patients have access to their health information, there’s an opportunity for them to speak up and work with their care team to correct or clarify any concerns.”

At some point, Dr. Posk envisions a dynamic approach where a patient’s knowledge base supports the release of test results. “Artificial Intelligence could provide a clearer understanding of patients’ choices and their healthcare literacy,” describes Dr. Posk. “For patients, there’s always a delicate balance between knowledge and information. As clinicians, we can bridge that gap by ensuring patients are empowered and informed.”