The Unfortunate Truth About Getting Your Medical Records
Updated: Jul 25, 2019
My family’s experience – and those of many others – led our research team at Yale to publish about the experience of people seeking to obtain their medical records. The story reveals an unfortunate truth about getting your medical records in America.
This story starts with Ken. My father-in-law. He is a former jeweler and appraiser – and meticulous about his record keeping, including his medical records.
Ken, who lives in Rhode Island, was visiting family in California when he had a seizure that was related to a stroke he suffered two years earlier. He was hospitalized at one of the nation’s most prominent institutions where he underwent testing and received treatment. He always carried with him some of his medical records for such a situation. The doctors appreciated having details on his medical history.
After returning home, Ken wanted to get his most recent medical records to share with his local doctors. That's when the problems began. After months of communication with the California hospital – and efforts by family members, a package with medical records finally appeared in the mailbox. To everyone’s dismay, they were only the records that he had provided when he was initially hospitalized. Years later, he still does not have the records from the California hospitalization.
Ken's experience - and stories from others - prompted our research team to do a secret shopper study at some of the country’s best hospitals. You may have seen these types of studies before – they involve someone posing as the customer and determining what is happening in the real world. To develop this study, we assembled patient advocates, researchers, clinicians, medical students, and an attorney who led efforts to write the federal regulations that protect patients’ access to their data. We wanted to know what it is like for patients to get access to their medical records— a protected right under federal regulations.
Carolyn Lye, a medical student at Yale who led the publication, represented herself as someone trying to get access to medical records on behalf of a family member. We also acquired the forms for requesting medical records.
Carolyn had a script for the calls. She said, in part: “Hello, I am calling on behalf of my grandmother. She has been seen at your hospital and we are collecting her medical record for a second opinion. Before we make this request, we had a couple of questions about the medical record request process. First, how do we make a request for the medical records? In what format can we receive the information? What are the costs associated with receiving medical records? How long does it take on average to receive the medical records? Can we request that the entire medical record be released?”
The first finding was that, among the 86 top hospitals that we identified, three had medical record departments that were unreachable by phone despite our persistent efforts. In these cases, a motivated and determined medical student could not even find a way to talk to a person about requesting medical records. We considered hospitals unreachable if on each attempt (up to five attempts were made during working hours) the phone call was not answered, went to voice mail, or if the answering system did not allow an option to reach a representative.
That was amazing – but only the beginning. In a digital age, when data move rapidly, we found that patients remain stuck in a paper era with obstacles between them and their data.
There were many discrepancies between medical record request forms and what staff relayed by phone. The differences surrounded what they would release and how they would release it. There was also great variation in the formats of medical record release, whether in person, fax, email, or CD. All did say that they could release records by mail. Only a minority could release information through electronic health record system portals. For only about a third of the hospitals, the request forms indicated the costs of the record release. The cost of a 200-page record (not a large record by current standards) ranged from $0 to $541.50. Sometimes the cost stated on the forms was different than the cost quoted by phone; it was often higher and sometimes lower. Processing times varied, with some hospitals indicating it would take more than 30 days for receipt of records.
For electronic formats, the results were really varied. Less than half of the hospitals reported by phone that they could transmit by email or provide by CD – or by the online patient portal. Some said that fees were the same for electronic formats and paper formats. There seemed to considerable confusion about what could or would be provided.
Our experience was consistent with federal reports that describe long waiting periods and unclear request processes. Perhaps the biggest problem is the lack of transparency in the process that leaves patients floundering. All of this despite the fact that federal regulations are clear that people have a right to their data – in the format they wish – and at minimal cost.
By shedding light on the experience of patients in trying to obtain their own records, our hope was to identify where we, as a health care system, could improve in this area. Little did we know that the answer would be – everywhere!
We live in a digital age. Information has value to patients – and the law clearly describes their rights to acquire their data. And yet, we are far from a truly patient-centered system with regard to health information. Meanwhile, many businesses are obtaining massive amounts of personal health information and using it for profit without people's knowledge. And people like Ken are left with the inconvenience and cost – and often no data.
If you want to know your federal rights, you should look here and here and here for information from the US Government Office of the National Coordinator for Health Information Technology, the federal organization charged with helping us with our electronic medical records. And here is information from the US Office of Civil Rights.
Seema Verma, the Administrator at Medicare and Jared Kushner at the White House are pushing for greater access to medical records. Medicare is actually working to ensure you can get your Medicare data electronically. And organizations like OpenNotes and the National Partnership for Women and Families and the Society for Participatory Medicine and others are advocating for better access. And some health systems are taking a positive approach.
So there is hope.
In the end, it is your data – and there's lots you can do with it. Your health records can help you understand, advocate for, and manage your care – you can correct mistakes – and you can increasingly use it for research, like with the NIH All of Us campaign.
Most importantly, it is information about you – and you have a right to it. It’s time to have the reality match the laws and enable people to exercise their rights to their personal health information. All of it.