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    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.


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