There has been quite a fuss lately over offering patients greater access to their health records, particularly with the introduction of Apple’s EHR app, which promises to bring electronic health records into patients’ pockets and introduce the era of bring-your-own-data in healthcare. But often that desire to bring patients into the fold gets quashed by a fear of cybersecurity and HIPAA compliance around health information.
Recently, for instance, a man was stopped from taking a photo of his own X-ray when a radiologist feared it might violate HIPAA regulations, which kicked off a discussion of similar incidents on Twitter. These incidents arise mainly because providers simply don’t understand the ramifications of HIPAA and other health IT laws — and where to draw the line with access.
Indeed, understanding the nuances of these regulations is particularly difficult now that technology affects all corners of healthcare: from telemedicine to remote patient monitoring to consumer glucose monitors to smartphones with thousands of health apps. This ubiquity has created new challenges for providers and patients, particularly when it comes to ensuring the privacy and security of patients’ protected health information (PHI) in accordance with regulations, such as HIPAA and the HITECH Act.
What Is the HITECH Act of 2009?
The Health Information Technology for Economic and Clinical Health Act, better known as the HITECH Act, was signed into law in February 2009 as part of the American Recovery and Reinvestment Act, which sought to address new needs as healthcare IT infrastructure began to expand and change exponentially. In particular, this legislation incentivized providers to adopt EHR systems, as well as expanded security and compliance requirements.
Moreover, it allowed the Health and Human Services Department to expand its enforcement of HIPAA requirements with the aim to increase provider vigilance and consumer confidence in how patient data is handled and secured. With this in mind, it can seem understandable that the waters around patients’ access to data can be quite murky.
New Data Privacy Challenges for Providers
Traditionally, healthcare providers have been held responsible for all aspects of privacy and security of patient data because they have created and controlled it. But boundaries shifted once electronic medical records came into play. The roles surrounding data privacy and ownership are now blurred.
One of the main challenges that comes with this change in ownership involves the use of smartphones by patients — in particular, patients using those devices to capture elements of their own medical data. The story of the man who was stopped from taking a photo of his own X-ray is not unusual. Often providers are reluctant to grant certain types of access, claiming that it would violate HIPAA, but most of the time that’s not the case.
What Are the Medical Records Release Laws?
In September 2015, the Office of Civil Rights, a division of HHS, issued guidance for consumers regarding medical record release laws that sought to encompass both HIPAA and HITECH guidance.
Patients have the right to:
- See and get a copy of their medical records
- Have errors and omissions in their medical records corrected (or their disagreements documented)
- Get a paper or electronic copy of their medical records
- Request the provider send their medical records to another party with permission
While there is fear from a provider’s point of view, the language in this guidance is clear and specific. It broadly provides patients access to their medical data and does not specifically limit patients’ methods of acquisition.
Patients have the right to see any single element of their record or the entire set of data, except for the few exclusions HIPAA has set aside (these exclusions are minimal and not relevant in this discussion). Diagnoses, lab results, a picture of a cut or an X-ray image are all part of the medical record.
If patients are legally permitted to see and obtain a copy of their records in their preferred form and format, then it follows that the patient should be able to take a picture of that information during an office visit or consultation with their provider.
While the story of the man who was stopped from taking a photo of his X-ray garnered plenty of attention, many times doctors do allow patients to take pictures. For example, a patient in an emergency department had a gash in her hand from a dropped glass. She asked the doctor if she could take a picture of her hand while glass was being removed. The doctor said yes. The patient posted a few of the pictures on her social media site. The photos include the physician’s hands but no identification of the provider.
Provider Concerns in the Bring-Your-Own-Data Era
While there is some hesitation around protecting ePHI, HIPAA is clear: Patients have the right to their own medical data in any form or format. Although the provider traditionally owns the systems that record and manage that data, they don’t own the data itself. A patient can use technology (including a smartphone) to copy that data, even if it’s on a computer screen in a physician’s office. Some providers will ask for a signed release, but that is not specifically required.
Patients must also understand that once they are in possession of that data, whether it’s a photocopy, electronic copy or photograph, they are solely responsible for the privacy and security of that data.
Provider concerns are twofold. First, there is a concern they will still be held accountable for the privacy and security of patient data they no longer control. Second, providers have traditionally controlled access to medical records because, as the creators of the data, they were uniquely qualified to interpret and act upon that data. With the consumerization of healthcare, many patients are taking an active and informed role in their own care. This requires access to the entire medical record, not just limited portions decided by the provider.
Studies show that engaged and informed patients have better outcomes. Providing access to medical records through viable technologies, including web portals, apps or even smartphone cameras, is the new reality of care. Patients are now included as part of the care team and are responsible for the privacy and security of the data they handle — their own. The next step may be helping patients understand the importance of protecting that health data.
Nothing in this article should be construed as legal advice. For specific guidance, contact your HIPAA privacy officer or legal representative.