The Cures Act Looks to Remedy Records Access
The legislation, which is designed to make information more available to patients, is reshaping how providers operate.
For more than a decade, up until her grandmother’s death in late 2021, Jennifer O’Meara coordinated her paternal grandmother’s medical care. Her grandmother lived in an assisted living facility for nearly 10 years, spending the last year on the memory care ward and the last four receiving palliative care only.
During that time, O’Meara says that some of her greatest frustrations—and concerns—stemmed from an inability to share information across the care continuum. “Every time she went to the hospital, the assisted living community would give the ambulance a paper list of the medications she was on, and every time they got to the hospital, they would ask me [for the details]. They wouldn’t have the list. I am not the one day to day seeing the exact medications and dosages my grandmother is on,” she says.
O’Meara, who did not have access to electronic records for her grandmother, says the assisted living community did not have the ability to share records electronically with the local hospital, leaving everyone lacking important information. On multiple occasions, hospital staff would not even know that their newly admitted patient had been diagnosed with dementia.
“It’s getting better with EMRs [electronic medical records],” O’Meara says. “A place like Jefferson Health [a Philadelphia-area health system], they have everything. But in a geriatric setting, especially in assisted living, they are woefully behind in terms of electronic records.
“If at any given time I could see exactly what medicine my grandmother was on, if I could access an app that shared this what she is taking and how much, it would have been so much easier,” she says. “I have so many copies of papers and things scribbled down. I had to remember all that.”
O’Meara notes that as her grandmother aged, trips to the hospital became more frequent, if only for precautionary reasons. “Think about how often I had to ensure I had this information readily available,” she says.
Unfortunately, O’Meara will never experience a more coordinated level of care for her grandmother, with information readily available and accessible to herself and her grandmother’s providers. However, she should have that opportunity with her own care, as well as her parents’ and her child’s care, thanks to the 21st Century Cures Act.
The 21st Century Cures Act
“The intent of the law is about accountability,” says Ellen Fink-Samnick, MSW, ACSW, LCSW, CCM, CCTP, CRP, DBH-C, principal of EFS Supervision Strategies. “The Cures Act is specific in its intent in that it outlaws any kind of information blocking, with blocking of patient data access being the primary area.”
There are two primary rules that have gone or will go into effect soon regarding information blocking. The first is that patients must be granted access as quickly as possible to their patient information upon request, free of charge. Previously, HIPAA required providers to grant access within 30 days.
“But that wasn’t always heeded,” Fink-Samnick says.
The Cures Act also widens the scope of what is to be shared with patients upon request, including the release of test results.
“The Cures Act assumes that HIPAA is not being properly followed in many cases and is not promoting fast enough access to patient information,” says Kelly McLendon, RHIA, CHPS, managing director at CompliancePro Solutions. “It’s assumed that HIPAA is being used as an excuse to be restrictive in certain instances. The Cures Act is there to open up the information flow.”
On October 6, more rules are scheduled to take effect, including one that states that patients must be able to access their information via third-party applications. This will require those in the health care industry to utilize standardized application programming interfaces to facilitate information flow between providers and patients. For example, information must be able to flow seamlessly from an EMR to an app on a patient’s smartphone.
Once this rule takes effect, it will not be excusable for record management platforms to be incompatible with the patient’s chosen third-party app, so long as the app abides by the rules for such access.
The Cures Act rules work hand in hand with “the OpenNotes movement that began in 2010 through a patient empowerment initiative at three major health systems. More than 200 public and private health systems already provide patients access to clinical notes in their electronic health records. The movement is focused on making health care more open and transparent by encouraging health care professionals to share their clinical notes with patients,” according to NASW’s Practice Alert for the Cures Act.
What to Expect
“I can’t speak for all, but how often have you met with a provider and had information shared directly from your record which was incorrect—a vitamin or medication you stopped taking, or perhaps a diagnosis that you never had?” says Fink-Samnick, who notes that the increased use of technology has led providers to move away from the art of documentation, producing errors due to haste or copying and pasting from previously inaccurate notes.
These mistakes can lead to awkward and uncomfortable moments when discovered during a client’s appointment. Worse, they can cause patient harm. Fink-Samnick says studies have shown that hundreds of thousands of patients experience preventable harm each year. “The costs of that when you look at risk management and litigation, it’s anywhere from $4 billion to $20 billion, because we know that if there was a death, that’s going to jack it up. And talking about those deaths, we’re looking at somewhere around 100,000 people dying annually from medical errors,” she says.
For example, O’Meara recalls an incident when her other (maternal) grandmother was admitted to the hospital incoherent. It was determined that her new cholesterol medication was the problem. O’Meara’s grandmother was taken off the medication and eventually discharged to a skilled nursing facility. The facility almost immediately placed O’Meara’s grandmother back on the same cholesterol medication, leading to further medical intervention. This was a preventable harm caused by poor documentation and a lack of information sharing.
Under the Cures Act, providers will be held more accountable because the information will be more readily shared. Such transparency reminds providers to take care with their documentation. Their notes should be accurate, detailed, and comprehensible.
Fink-Samnick sees the Cures Act as presenting providers with an opportunity. “All patients (and their responsible legal party) deserve the right to be informed about their assessment, any diagnosis, and treatment especially if they have capacity,” she says.
Fink-Samnick says the act reinforces the importance for patient documentation to be written in a way that is understandable; addresses each patient’s needs and requests, such as health literacy challenges, language proficiency, and diversity, equity, and inclusion across the cultural schema; engages patients in the treatment process and from a lens of concordant vs discordant care; and ensures ethical principles of practice with respect to patient autonomy, integrity, and worth of the person, as well as social justice.
The Cures Act also aims to motivate patients to be more involved in their health care. When patients have access to their health information, it’s not just that they have the opportunity to spot errors. They also are better equipped to have open and honest discussions with their providers and to make informed decisions about their care.
Understanding the Act
It can seem daunting and overwhelming. When McLendon first encountered the act, he was struck by “the length, the complexity, and the fact that it was very difficult to get your arms around it.” He continues to be. “Many of my peers don’t understand the magnitude of what they’re facing. They’re just seeing pieces of the elephant. It’s so large and encompassing and so complicated that not everyone is seeing everything right now. Things like this are so complicated. It’s just going to take, frankly, years to get it all lined up and working properly,” McLendon says.
Nevertheless, complexity does not negate need. McLendon recommends providers adopt a two-pronged approach. First, read the rules and the guidance published by the government. “Then go out in the marketplace and find some trusted sources. Read their materials, some of which will raise questions you’ve never thought of before,” he says.
Fink-Samnick agrees. “I think there are a lot of resources out there to help put the laws into practitioner speak. What are my go-tos? NASW’s Social Work Ethics and Law Institute is a powerful resource. I read everything that Mirean Coleman writes. She’s outstanding. I always defer to her, because she will look up the law and put it in a context social workers understand. The Cures Act is no exception.”
Digging for such detail and clarity alerts practitioners to the nuances of the law and allows them to identify what exactly applies to them. For example, under the Cures Act, clinical notes written by social workers in health care settings must not be blocked, nor can notes by social workers in mental health settings. Only notes that meet HIPAA’s definition of psychotherapy are excluded. There are additional exceptions to granting access to health information, such as the preventing harm exception.
Knowing these details lays a foundation for ongoing compliance from the practitioner and allows for proactive action.
For example, McLendon recommends that providers reach out to their EHR vendors for clarity on how the vendor is approaching the new rules and regulations. The vendors will be preparing themselves, “but that doesn’t mean that they’re reaching out to their customers yet,” he says. “The vendors are going to want to get to a certain point in their plans before they reach out. But proactive customers reach out. If they have EHRs that are certified, then they need to be working with those vendors right now.”
However, regardless of size and structure, all providers must adhere to the act. “Whether or not you work for an organization, whether or not you accept insurance as a provider, you’re still beholden to the same laws,” Fink-Samnick says. This means that small providers and organizations must find the time to prioritize the Cures Act and what it means for their practice.
Additionally, once all the rules are in effect, providers should be prepared for adverse events. For example, McLendon is concerned about perceived liability. “The downside that worries me greatly is that the mobile health apps are not covered by HIPAA,” he says. “They can sell your data. I work mostly with HIPAA entities. What I worry about is that the information from the HIPAA entities will move to applications that do not have HIPAA, and it’s going to blow back.”
McLendon anticipates providers being blamed, at least initially, for any improperly shared data. Therefore, he recommends providers be prepared for that possibility. “Be very careful and have very good records of what left your facility when and to what apps,” McLendon advises. “If there’s not human intervention in that process, make sure your log files are detailed. You’re going to have to defend yourself.”
Finally, recognize that it’s a change, and change is hard. “Changes to regulations make all providers leery, even if the change has good intent,” says Fink-Samnick, who recommends providers view the Cures Act as an opportunity. “I see the regulation and the act as a way to document that what we’re doing is sound, effective, compliant, and in accordance with the laws in ethical practice.”
— Sue Coyle, MSW, is a freelance writer and social worker in the Philadelphia suburbs.