November 2019, Volume XXXIII, No 8
Health information “blocking”
Denying patients access to health records
oliticians continue their promises and academics continue to espouse the need for “interoperability” of patient health records—which would allow different electronic health record (EHR) systems to exchange information between providers—but steps to achieve this are, at best, glacial. At worst, efforts to do so are stuck in political and technological muck, which some people disguise with words such as “security” or “quality.”
A top “solution” that is constantly touted in the health care debate usually goes something like this: Patients should be able to have their health care records accessed, in a secure manner, when they give permission to a health care provider to do so. Despite the general consensus that such a solution is good for continuity of care, for cost reduction through elimination of duplicate services, and certainly for the ease of patients-shuffling-around-with-paper-records at a time when they are most vulnerable, it is not happening. And it is not happening primarily because some health providers and their vendors don’t want it to happen, because it doesn’t contribute to their “business” plan.
EHRs hold the promise to be an effective tool for clinicians and communities when built with the goal of expanding access and empowering patient choice. Unfortunately, in many circumstances, this objective has been far from realized. In fact, some health systems and providers have developed their EHRs with the intent of erecting electronic fences instead of achieving bi-directional interoperability. These “fences” are often the tool of choice for those engaging in health information blocking. The result of health information blocking is the denial of choice by restricting the sharing of patient information through secure, federally certified and HIPAA‐compliant electronic connections between providers. This blocking serves to deny patient choice, even when a patient’s health plan network allows choice, all in the name of profit.
Both former Vice President Joe Biden and Seema Verma, current administrator of the Centers for Medicare and Medicaid Services, have shared their personal experiences with a family member not being able to access health records when they sought care outside of certain health systems. Indeed, the 21st Century Cures Act, enacted in 2016 and meant to be a “moonshot” to cure cancer, included major provisions mandating that our health care system become bi-directionally interoperable.
The stories from patients are sometimes agonizing, such as a cancer patient having to redo a painful test because the records couldn’t be transferred electronically and the geographic distance was too great to hand carry them. Then, there are the downright irritating situations where a patient with a high-deductible health plan asks to use a lower-priced specialist or seek a diagnostic test, only to have the physician who suggested the referral refusing to write a referral for a provider outside of a particular health system, or saying that they don’t know how to write an order for outside the health care system—or telling the patient to stay inside the health system for all services so that the patient’s medical record “is complete.”
The federal Office of the National Coordinator for Health Information Technology (ONC) recently found that an examination of health information blocking was “both timely and warranted” given the federal government’s investment of nearly $30 billion through the HITECH Act, a 2009 law passed in part to promote interoperability among providers. The ONC has also surveyed stakeholders to measure the exchange of health information using certified electronic health records to ensure that health information technology is interoperable in the coming years.
Electronic “fences” also cloak or otherwise inhibit cost transparency.
Further, provisions in the 21st Century Cures Act seek to promote interoperability in the design and use of certified electronic health records, including a requirement that providers attest that they will not engage in information blocking as part of “meaningful use.” Rulemaking is still taking place, but the focus at the federal level is promising.
Individual states have also taken note of the substantial clinical impediment and systemic additional costs that the intentional blocking of health information creates for patients, providers, and budget makers. Notably, when investigating ways to improve quality of care and reduce costs, the Connecticut General Assembly’s “Bipartisan Round Table on Hospitals and Health Care (2015)” effectively found that major health systems were utilizing their EHRs as part of their strategy in their mission to grow and acquire new practices. Further, the state roundtable determined that “The state must affirm as a matter of policy that health records belong to the patient, not the provider. Patient medical records are not proprietary and should not be used for competitive advantage.” Accordingly, Connecticut has passed laws defining the act of “health information blocking” and has rendered the state attorney general responsible for enforcing the provisions under the state’s “unfair trade practice” statutes, punishable by a $5,000–$25,000 fine per occurrence.
Several other states, including Minnesota, have considered similar actions but with variations on their definitions of information blocking and achievement of interoperability. This includes Medicare fee‐for‐service patients, who, under the Affordable Care Act, are mandated to be able to choose their provider. To ensure that all Medicare beneficiaries are provided with the same access to their own health information, the role of government to define, guide, and encourage bi-directional interoperability is imperative.
Electronic “fences” also cloak or otherwise inhibit cost transparency and price shopping by the patient. Often, patients are told that if they choose a physician who is not part of a particular health system, their relevant information will not be a part of their health care record, thereby discouraging patients from using cost, geographic or scheduling convenience, or specific provider qualities as part of the decision‐making process. This occurs despite concerns about potential high deductibles and co‐pays and even contributes to duplicative tests, including those which carry risk to the patient. One example of this: duplicating CT imaging studies, thereby exposing the patient to additional and unnecessary radiation. This chilling effect on choice results in increased costs to patients and purchasers, contributes to overburdening of our health care system, and threatens patient access to care. The reduced access to care concern is especially evident in rural regional centers, where health systems “colonize” the region and blatantly fence patients away from independent providers.
Additionally, at a time when clear data demonstrates that the consolidation of health care providers increases costs, the blocking of health information constitutes a serious business challenge for independent physicians who are dedicated to providing quality care to their community. If they do not offer all the services of a large health system that their patients need, they are often blocked from providing any care because of a local, potentially dominant, health system’s lack of reasonable responsiveness to establishing a secure electronic connection with them. Particularly in rural areas, there is sometimes a confidentiality issue, where the patient prefers to seek a certain health care service outside the hometown but risks inappropriate care if the patient’s records cannot follow the patient.
Patient medical records are not proprietary and should not be used for competitive advantage.
“Health information blocking,” as noted above, occurs when a person or entity attempts to interfere with the efficient, timely, and HIPAA-secure transfer of a patient’s medical records or order for additional health services. In practice, this concept includes situations where providers or systems resist or delay sharing patient data with providers of the patient’s choosing, as well as situations where systems or vendors charge a cost-prohibitive amount for electronic connectivity to their system.
“Front end” health information blocking occurs when the treating clinician can only electronically order tests or refer to another clinician within his/her health system. This is also referred to as “white listing.”
“Back end” health information blocking is when, for example, a hospital will not allow diagnostic images from another provider into the surgical suite, despite both providers having secure, certified electronic platforms. Both types of information blocking may also be a HIPAA security issue, as more errors are made when health information is transferred manually than securely through certified EHRs (e.g., wrong fax numbers, mailing a report to the wrong address, or labeling a CD with the wrong name).
Some health systems mask their true values by “accepting” health records from outside their EHR but find ways to refuse to “share” any patient information which they hold, even when the patient requests it to seek care outside of that particular health system. This is why “bidirectional” interoperability must be pursued. The patient’s information can be securely sent out of the health system and be accepted, electronically, by the health system.
One provider’s experience
The Center for Diagnostic Imaging (CDI), which operates in 49 states, has a top security rating and is securely interfaced with hundreds of other health care providers. Yet, CDI still encounters health providers who have stated it is “not in our business interests” to electronically interface with CDI, or they have provided such an obtuse, round-about electronic connection—or have stated they may possibly work on an interface with CDI in 18 months or more.
Considering the intent of federal laws and what is best for the patient, all of these responses are highly unethical. If a large imaging provider like CDI has these difficulties, how can a small physician office that offers cost-effective, high quality, patient-focused care have the ability to remain a resource to the community?
Public policy makers, at all levels of government, must push forward with regulatory teeth to back up their words. Purchasers/employers and commercial health plans must do likewise. This is not a solution that will be achieved without the involvement of elected officials and those managing the finances of our health care system. Secure, bi-directional interoperability of health care records is doable and pertinent.
© Minnesota Physician Publishing · All Rights Reserved. 2019
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Christopher “Kit” Crancer is director of the Center for Diagnostic Imaging (CDI) and currently serves as Senior Director of State Legislative Policy. He is a registered lobbyist in a number of state capitols, including Hartford, and manages CDI’s contract lobbyists and legislative priorities. Prior to joining CDI, Mr. Crancer served as chief of staff to multiple Missouri state senators and managed one of the state’s largest political action committees.