Changes in Federal Regulations Give Patients a New Right

Many consider blood tests to be a yearly formality. Feeling great, we reluctantly allow our physician access to our arm (preferably non-dominant). Most of us don’t even call to ask about the results, assuming the doctor has no bad news to deliver.  But for people with serious illnesses, results from blood and other tests can be crucial to understanding their condition and planning for the future. As a family member of a leukemia survivor, I saw lengthy reports monitoring factors like hemoglobin and platelet count and detailed analyses of bone marrow examinations. These allowed doctors and my family to monitor the progression of the disease and schedule treatments like chemotherapy and radiation accordingly. The way we access medical records and lab results has changed with technology as more data becomes available online and through apps. It will continue to change as federal regulations are altered. Currently, doctors and hospitals are federally mandated to provide records within 30 days of a patient’s request. By year’s end, patients throughout the U.S. (and not just the seven states where it is currently permissible) will be allowed to request results directly from labs. “The Anxiety of Waiting for Test Results,” by the New York Times’ Jan Hoffman, discusses possible consequences of this new right.

Hoffman explains the double-edged nature of getting lab results directly. On one hand, patients relying on doctors for information can lead to lengthy waits, lost results and potentially bluntly delivered news. On the other, if patients access this information without a doctor serving as an intermediary, it could cause confusion and even more anxiety than waiting a little while longer for the results would. Hoffman mentions that clinical studies on cancer patients have shown that stress can prolong recovery time and worsen side effects from medications. One study by Lang, Berbaum and Lutgendorf at Harvard Medical School examined cortisol levels in three groups of women. One group was uncertain about their breast cancer diagnosis, one was certain that theirs was benign and one was certain that theirs was malignant. The group with women that were uncertain about their diagnoses had cortisol levels that indicated biochemical distress, which the researchers associated with poor immune defense and wound healing. In a study conducted by the Wake Forest Baptist Medical Center, Hoffman writes, 80 percent of patients said they’d prefer to access information online within three days rather than wait longer for a doctor’s interpretation. Finally, Hoffman brings up findings by Dr. Hardeep Singh, which reveal that doctors delay or fail to notify patients of around 36 percent of abnormal test results.

Hoffman explains for the counter-argument: “The variety and complexity of tests continue to grow. Many do lead to critical interventions. But others merely point to statistical possibilities… These results often require a subtle, sophisticated interpretation that may be far beyond the average patient’s first reading.” Hoffman states that direct access to test results must come with more doctor support. He quotes Dr. Jason Poston of the University of Chicago Medical Center, who believes that doctors must educate patients before tests so they have realistic expectations and establish themselves as a “critical guide and partner in the patient’s care.” Hoffman also brings up Dr. Poston’s belief that “Informed, calmer patients… are more likely to comply with tests, surgery and medication, increasing the likelihood of better outcomes.”

In his book, The Last Lecture, co-authored by the late Carnegie Mellon University professor Randy Pausch, there’s a scene in which he describes discovering the ten tumors in his pancreas that would eventually take his life before the doctor got a chance to break the news to him and his wife. “The examining room had a computer in it, and I noticed that the nurse hadn’t logged out; my medical records were still up on the screen… I clicked around and found my blood-work report. There were 30 obscure blood values, but I knew the one I was looking for: CA 19-9 – the tumor marker. When I found it, the number was a horrifying 208… 208 indicated metastasis: a death sentence… In a way, I felt an odd sense of relief. For too many tense months, Jai and I had been waiting to see if and when the tumors would return. Now here they were, a full army of them. The wait was over. Now we could move on to dealing with whatever came next.” For some, especially the terminally ill, getting access to information as early as possible could allow for better quality of life.


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