Uncle Sam more than ever wants it to happen, and patient advocates are pushing hard, too. So, why, when technology can make it easier than ever to do so, must patients struggle still to get easy, convenient, low- or no-cost access to invaluable electronic records about their own health care?
Judith Graham, a columnist focusing on aging issues for the Kaiser Health News Service, has written a timely, troubling update on perplexing challenges consumers still confront when trying to secure their electronic health records (EHRs).
She cites a study recently published by Yale researchers who gathered information from 83 leading hospitals that purport to assist their patients with EHR access. The experts swept up policies and forms the institutions said patients would need, then contacted them, telling hospital staffers not that they were academic researchers but that they were checking on behalf of an elderly relative in need of their records and how soon and how difficult and costly might it be to get them? This is an everyday dilemma for consumers, and the institutions should have dealt with these requests with ease and alacrity.
Alas, Harlan Krumholz, a physician, co-author of the study and professor of medicine, epidemiology and public health at the Yale University School of Medicine, told Graham, “The unfortunate truth is that the system doesn’t give patients reliable or consistent responses. And some people who work in medical records departments appear to be ignorant of the law and the rights that patients have.”
As she reported:
In many cases, the information on forms didn’t match what researchers were told on the phone. Sometimes their answers violated federal or state legal requirements. Notably, only 53 percent of hospitals’ forms indicated patients coIuld get their complete records. This right was acknowledged in all the phone calls. Forty-three percent of hospital forms didn’t disclose the estimated cost of obtaining records, as required. In phone calls, all but one hospital disclosed costs, but 59 percent cited a higher-than-government-recommended fee for electronic records.
She also makes clear what’s required of care-giving facilities:
Under a groundbreaking law, the Health Insurance Portability and Accountability Act of 1996 (HIPAA), patients have a right to get some or all of their medical records upon request. (Psychotherapy notes can be excluded.) Hospitals, medical clinics, physician practices, pharmacies and health insurers are required to make this information available within 30 days (sometimes a 30-day extension can be granted), at a reasonable cost and in the format that patients request (for instance, paper copy, fax, electronic copy or CD), if possible.
Still, patients and their family members can be thrown into bureaucratic thickets when trying to get records, so, for example, they can avoid unnecessary and redundant tests and procedures and protect themselves from problematic misunderstandings about care and treatment they have and will get.
Patients are upset — and rightly so, Graham reported, adding:
After receiving a large volume of complaints about records’ cost and accessibility, the Office for Civil Rights of the U.S. Department of Health and Human Services, issued new guidelines in January 2016. For electronic records, the guidelines prohibit per-page charges and recommend a maximum cost of $6.50 for consumers. They also clarify patients’ right to have records sent to third parties, including family members or professionals advocating on their behalf.
To her credit, Seema Verma, the Trump Administration’s head of the Centers for Medicare & Medicaid Services (CMS), has campaigned to improve patients’ access to their electronic health data with the MyHealthEData initiative. It seeks to not only give consumers control of this crucial personal information but also to make it so patients, doctors, hospitals, and nursing homes can access it more easily but always securely.
The nonprofit, nonpartisan RAND Corporation and the Pew Charitable Trusts also partnered recently to see how even more recent technology — notably ubiquitous smart phones and apps — can help patients wrestle with troublesome, commercial and proprietary software and programs used by hospitals and health care systems to match and move their health records around, again, with greater convenience and while ensuring their security. Graham also points out that the nonprofit, nonpartisan National Partnership for Women and Families set up the GetMyHealthData initiative to inform and assist patient-consumers about the value and means to get their own important medical information.
To be clear: They’re legally entitled to this material , whether it’s from hospitals, nursing homes, or doctors’ offices, where they may encounter even more misunderstandings, logistical snafus, and incomprehensible obstacles.
In my practice, I see not only the harms that patients suffer while seeking medical services but also their anxiety, anger, and frustration in trying to stay fully informed and to document the safety, quality, and cost of their medical care. Their informed consent should be a paramount concern of medical practitioners, as should be the quality, safety, and security of their medical records.
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 for patients as step one to improve their 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. Doctors and hospitals may throw up obstacles to your getting your own records. Don’t be deterred. And don’t let others compromise the privacy of your health records, electronic or otherwise.
It’s unacceptable that patients encounter any obstacles to getting their records. We should be past this discussion, though it’s clear we have much work to do still.