20 May Drowning in Data, Yet We Can’t Get Our Own Medical Records
Oliver was visiting his son in San Francisco when he had a seizure. He was hospitalized at one of the area’s premier medical institutions where he underwent testing and treatment. Oliver had had a stroke several years before, so as a precaution, he always carried his medical records when he traveled.
Oliver is still waiting for his medical records
When Oliver returned home, he contacted the hospital to get his treatment records. After months of communications, a package with medical records finally arrived. Impossibly, they were his original records—the ones he had provided when he was hospitalized. Years later, he still doesn’t have the records from his California hospitalization.
Federal law guarantees the right to see and obtain a copy of our medical records
Even in this digital information age, medical records can be difficult for patients to get. But they shouldn’t be: Federal law guarantees that people have a right to see and obtain a copy of their medical records.
A Yale University study reveals barriers to accessing records
In a Yale study, researchers called the hospitals and asked how to get records, the associated cost, how long it would take, the format in which information would be sent and whether the entire record would be available. “The unfortunate truth is that the system doesn’t give patients reliable or consistent responses,” said Dr. Harlan Krumholz, co-author of the study and professor of medicine, epidemiology and public health at the Yale University School of Medicine.
HIPAA guarantees patients’ rights to their medical records
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, at a reasonable cost and in the format that patients request, if possible.
The benefits of being able to review medical records
Research suggests that reviewing medical record scan be beneficial on several levels. Studies show that people are more likely to follow treatment recommendations, remember what happened at medical visits and feel engaged in their care when they have access to this information.
But HIPAA requirements are often misunderstood
Jacqueline O’Doherty, a New Jersey geriatric care manager encountered problems when she tried to see records for an 80-year-old client who was being transferred from a hospital to a nearby rehabilitation facility.
Although the older woman had signed a form appointing O’Doherty as a “designated representative” — a status that should have allowed O’Doherty access to her clients’ records — a hospital nurse refused to let O’Doherty check the client’s lab results, medication list and discharge summary. It was only when an infectious-disease doctor intervened, citing the need for continuity of care, that O’Doherty was able to review her client’s records.
New guidelines from the Office for Civil Rights of HHS
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’ rights to have records sent to third parties, including family members or professionals advocating on their behalf.
Despite these protections, the forms used to request records aren’t standardized and can be confusing
Problems may be even more common at physician practices, which often don’t have medical records departments. When GetMyHealthData, a campaign to expand access to digital health information, asked consumers about their experience, people described poorly informed or unhelpful staff, high fees, long waits and frustrating bureaucratic processes.
Electronic patient portals don’t solve the problem
Many of us are familiar with our healthcare systems’ patient portals, and theoretically, this is where we should be able to obtain comprehensive information. Yet most contain limited information and don’t include a way for patients to request records such as the notes physicians take during patient visits.
MyHealthEData Initiative is focused on improving access to medical records
The government is making improved electronic access to medical records a priority through MyHealthEData Initiative.
Become your own advocate to secure copies of your medical records
If your hospital or doctor’s office declines to make your records available, print out materials about your rights and use them to advocate on your behalf. Tell staff, “I’m entitled to a copy of my records: This is my legal right, as explained here.”
- A good resource is amodel medical records release form created by the American Health Information Management Association. Copy and take this with you to help make your case.
- To familiarize yourself with your rights, review the Guide to Getting & Using Your Health Records, published by the government’s Office of the National Coordinator for Health Information Technology.
- Do review the Get Your Data section of the GetMyHealthData website, which includes a clear summary of your rights, how to request your medical records, and troubleshooting suggestions if you encounter obstacles.
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