Initiatives open up patient access to their health info

Patients are demanding transparency and access to their health information, and recent initiatives from the government and private insurers are addressing these demands.

Robert A. Dowling, MD

A number of buzz phrases in health care today describe a new focus on patients taking an active role in their health: “personal health records,” “participatory medicine,” “shared decision making,” and “patient engagement,” to name a few. Patients are demanding transparency and access to their health information, and recent initiatives from the government and private insurers are addressing these demands.

In 2014, there remain significant barriers to a broad, connected patient community, not the least of which is patients’ access to their own health information. In this article, I will address some recent developments that show these barriers are starting to come down.

Access part of meaningful use Stage 2

In Stage 2 of the Electronic Health Record Incentive Program, one of the core objectives is to provide patients an ability to view, download, and transmit their health information. The two measures relating to this objective require providing online access to more than 50% of patients and documenting that more than 5% of patients use it (

The most common method for meeting this objective and these measures is the “patient portal,” typically connected to the EHR of a health care organization. Providers often bear the cost of portal implementation and are usually responsible for enrolling patients. Early adopters in the urology community have found patients sometimes have to be sold on the idea of enrollment (personal experience), and it will be interesting to see whether 50% enrollment is currently achievable in our specialty.

Once enrolled, patients tend to use the portal to send/receive messages and access test results, but comprehensive access to the entire medical record is unusual today. (See discussion of “open notes”)

Continue to next page for more.


New CLIA rule on lab results

In another important development regarding patient access to their health information, on Feb. 3, 2014, the Department of Health and Human Services announced a final rule amending the Clinical Laboratory Improvement Amendments to “allow laboratories to give a patient, or a person designated by the patient, his or her ‘personal representative,’ access to the patient’s completed test reports on the patient’s or patient’s personal representative’s request.” (

Practices that have implemented patient portals know that releasing test results to patients before a review by providers can generate some vigorous debate about benefits and risks. Concerns include how a patient might react to a malignant diagnosis or positive test, whether patients might cancel important follow-up appointments to discuss results, and loss of control by physicians. This new ruling, issued jointly by the Centers for Medicare & Medicaid Services, the Centers for Disease Control and Prevention, and the Office for Civil Rights, will set a new standard for those discussions. Urologists should be prepared to embrace a new reality where patients may have their test results before their physician does.

The government has also created the “Blue Button” initiative (see to allow Medicare beneficiaries, veterans, and those insured through the Federal Employees Health Benefits Program to download certain information about their health. Blue Button is powered by new standards that allow systems to “talk with each other,” known as interoperability in health information technology circles. UnitedHealthcare and Aetna have Blue Buttons for their beneficiaries, and you should look for this functionality to expand to most payers, pharmacies, provider organizations, and others in the health care information ecosystem.

Movement opens access to visit notes

Taking access to health records a step further is the mission of the “open notes” movement. Allowing patients to review their actual visit notes complements patient access to health care information and may help prevent errors, create more accurate records, engage patients in their own care, improve compliance with care recommendations, and create other benefits for patients and their physicians. Early adopters of the open notes concept include MD Anderson Cancer Center, Houston; Beth Israel Deaconess Medical Center, Boston; Geisinger Health System, Danville, PA; the Veterans Health Administration; and University of Washington Harborview Medical Center, Seattle (

Bottom line: Urologists should prepare their practice to face new expectations around patient access to their health care information. New electronic standards, federally backed initiatives to support interoperability and information exchange, early adoption by payers and progressive provider groups, and a growing consumer demand will likely fuel this movement. Patients desire a new level of transparency in what has been a system full of opaque costs and information, and health care is likely to see the same innovations in consumer access that have characterized banking, travel, and other service industries.UT


Like this article? Check out these other recent Urology Times articles:

Master fee schedule: How it can help your practice

Meaningful use Stage 2 ramps up info sharing

How to stay on top of electronic information

The patient information access blogosphere

We now practice urology in an era of shared decision making and empowered patients. Urologists who are interested in this movement would be advised to read about e-Patient Dave, a noted blogger (, and Regina Holliday, an advocate of patients’ rights who uses art to communicate her message ( Interestingly, both were touched by a urologic disease (metastatic kidney cancer), and both chose to use their experience to help patients become more engaged in their own health care. I recently met Dave deBronkart, the man behind e-Patient Dave, and he invites you to join him online for a new perspective. Also visit the walking gallery at

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