Patients have hit a red-letter day in the long, too-difficult struggle to win control of a crucial part of their care — their electronic medical care records. Hospitals and other caregiving institutions no longer can block access to these documents, with federal law now holding them accountable for any runarounds they may try.
As Stat, a medical and science news site, reported:
“Under federal rules taking effect [Oct. 6,2022], health care organizations must give patients unfettered access to their full health records in digital format. No more long delays. No more fax machines. No more exorbitant charges for printed pages. Just the data, please — now. ‘My great hope is that this will turn the tide on the culture of information blocking,’ said Lisa Bari, CEO of Civitas Networks for Health, a nonprofit that supports medical data sharing. ‘It’s a ground level thing to me: We need to make sure information flows the way patients want it to.’”
Stat also reported that health organizations have thrown up too many, unacceptable obstacles to patients who want access to information that really belongs to them. The institutions may be acting in their own interests, rather than those of their most important clients or customers — patients:
“Health systems, data networks, and the companies that sell electronic medical records determine how much data patients can access, when, and under what circumstances. Meanwhile, private data brokers make huge profits by amassing hundreds of millions of de-identified medical records and selling insights to drug companies, device makers, and insurers without patients’ knowledge or consent. The new federal rules — passed under the 21st Century Cures Act — are designed to shift the balance of power to ensure that patients can not only get their data, but also choose who else to share it with. It is the jumping-off point for a patient-mediated data economy that lets consumers in health care benefit from the fluidity they’ve had for decades in banking: They can move their information easily and electronically and link their accounts to new services and software applications.”
That, realistically, won’t happen in a snap, Stat reported. Patients can expect to encounter roadblocks still in getting their records from resistant medical providers. The 21st Century Cures Act, the federal law that advocates hope will throw open doors, provides exemptions to some records disclosures, which slowly, slowly, slowly, have become more available in limited but increasingly wider fashion.
Harlan Krumholz, a cardiologist at Yale University and founder of Hugo Health, a company that helps patients collect and organize their health data, described for Stat the simple, direct goal of the latest federal law on medical records:
“It’s really simple — I have access to all my data, and people need to make that available to me digitally at my request.”
As he and others also explained in the Stat news article:
“[P]atients’ ability to get their data means they can better understand their care, shop for services, and participate in research without waiting for a clinician, or drug company, to present them with an opportunity. ‘I hope it will become clear that we need to switch from a paternalistic system where a lot of data is moving behind peoples’ backs and without their permission or knowledge, to one where people have more control and agency over their data,’ Krumholz said. Now, Krumholz said, patients can have their own personal repository of data that they can build on and ferry from one health care setting to another.”
While doctors, hospitals, clinics, and other health providers have known for a while that the federal laws governing medical records would be changing, they are moving at different rates in adapting — and patients may feel the technological bumps.
The New York Times, for example, reported that some medical testing companies have worked faster than doctors or hospitals expected in providing results from procedures directly to patients. This has meant that some patients have learned from postings in hospital information portals that they may suffer from serious medical conditions that their doctors don’t yet know about or have told them about.
Patients have differed in their reactions to such disclosures, with some saying that they were glad to get complex data ahead of doctor visits, so they better could digest it and discuss it more calmly with caregivers. Others, though, expressed shock and dismay. This problem may get ironed out, as doctors realize that they need to better explain more fully to patients, in advance, what tests, screens, or procedures do and may reveal, rather than catching up, after results come in. The federal rules, advocates say, also provide clear exemptions that can allow medical providers to withhold specific types of information, for example, if clear harms would result from its disclosure.
Patients can learn more about the federal laws at a U.S. Health and Human Services agency site, though the topic can be tough sledding because it quickly delves into technical material. They key to know is that your medical records belong to you and others have even less reason than they ever have to withhold them from you in great detail now, regardless of the form they are in (electronic or paper).
In my practice, I see not only the harms that patients suffer while seeking medical services, but also their struggles to access and afford safe, efficient, and excellent medical care — and to understand and have control of what’s happening to them and their loved ones in a daunting system. Health care has become an ordeal for patients due to its skyrocketing complexity, uncertainty, and cost for treatments and prescription medications, too many of which turn out to be dangerous drugs.
Doctors make it their prime order of business in taking on a patient’s care to look fast and first at the individual’s health record. The information therein does not belong to care givers or any system — it is patients’ “property.” And if it is so crucial to patients’ care, they should not only own it but be able to get it, see it, and, yes, to have it explained to them, in detail, as part of their fundamental right to informed consent. This means they are told clearly and fully all the vital facts they need to make an intelligent decision about what treatments to have, where to get them, and from whom.
In my book, The Life You Save, Nine Steps to Finding the Best Medical Care – and Avoiding the Worst, I list getting and reading these documents or e-files for patients as step one to improve your medical care. Seeing and studying your medical record can provide you with invaluable information and insights about your health and conditions, their sustained care, and how well you and your doctor are communicating and understanding each other about it. You’ll learn a ton about how good your doctor is or isn’t. You’ll get an eye-opening and new view of your doctors and your care. Talk to your providers, correct errors, and misapprehensions, and stay atop those records to ensure, for example, that doctors don’t order duplicative tests or procedures, or that nurses and other clinical staff don’t list wrong medications or treatments.
Doctors and hospitals may throw up obstacles to getting your own records, many of which are available to you on “patient portals” of hospitals and health systems. Don’t be deterred. And don’t let others compromise the privacy of your health records, electronic or otherwise. This is becoming a significant threat for hospitals and health care systems, and you may wish to talk with your doctors and care giving institutions to see what steps they may be taking and what public support they may need to deter hackers.
