Engaging Patients in Their Care Can Be a Matter of Life and Death
Marcella Schankweiler’s husband, Peter Bossow Jr., was feeling consistent fatigue and shortness of breath. He reported his symptoms to his doctor, who performed a computerized tomography (CT) scan and told him that the result was normal. It was not until a second provider gave Bossow a chest X-ray four years later that he discovered he had a tumor the size of a football in his chest cavity.
When the initial CT scan was used as a comparison, Peter found that the tumor had been detected and noted in the imaging report; however, he was never given this information. “His life would have been spared if we had received a copy of the test results four years earlier,” Schankweiler says.
Bossow’s case and similar patient events were instrumental in helping to pass a law in Pennsylvania named the Patient Test Result Information Act, aka Pennsylvania Act 112 of 2018, that requires radiologists and their facilities to report significant abnormality findings directly to patients. The Act helps to engage patients in their care and prevent a missed or delayed diagnosis.
Before the law was passed, patients usually were informed about the results only through their ordering healthcare provider. When the test was ordered at their provider’s office they may have been told, “No news is good news,” and assumed the result of their test was negative because they did not hear anything further. Or the abnormal result may have been missed by their provider if it was an incidental finding.
Former state representative Marguerite Quinn wanted to change the flow of test result information. Two of her constituents had died after their physicians failed to notify them of a detected malignancy, so she sponsored the bill to provide a safety net by communicating significant abnormal test results directly to patients.
“Communication of the diagnosis can be just as important as the diagnosis itself,” she says. “If the patient does not know of the results, the patient will not pursue the proper medical treatment. Act 112 can prevent this critical information from falling through cracks by closing this loop.”
Pennsylvania is the first and only state in the United States to take a hard look at this communication issue and focus on the rights of patients to know the results of a significant abnormal imaging test directly from radiologists and their facilities.
Patient Test Result Information Act—Enactment, Act of Oct. 24, 2018, PlL. 719, No. 112, An Act https://www.legis.state.pa.us/cfdocs/legis/li/uconsCheck.cfm?yr=2018&sessInd=0&act=112. Accessed June 3, 2020.
Commonwealth of Pennsylvania Legislative Journal. Transcript of Pennsylvania House Floor Debate, January 24, 2018. Available at: https://www.legis.state.pa.us/WU01/LI/HJ/2018/0/20180124.pdf. Accessed June 3, 2020.
Pennsylvania Medical Society Letter to the Pennsylvania Department of Health. December 4, 2018. Available at: https://www.pamedsoc.org/docs/librariesprovider2/pamed-documents/pamedhaplettertodoh_act112.pdf?sfvrsn=47d574ca_2&utm_source=MagnetMail&utm_medium=email&utm_term=PAMED%20Staff&utm_campaign=Act%20112%20News%5F12%2E17%2E18. Accessed June 3, 2020.
Pennsylvania Department of Health. The Patient Test Results Information Act, Act 112-2018, Clarifying Guidance. Available at: https://www.health.pa.gov/topics/Documents/Facilities%20and%20Licensing/The%20Patient%20Test%20Results%20Information%20Act%20Act%20112%202018.pdf. Accessed June 3, 2020.
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Patient Test Result Information Act—Enactment, Act of Oct. 24, 2018, PlL. 719, No. 112, An Act https://www.legis.state.pa.us/cfdocs/legis/li/uconsCheck.cfm?yr=2018&sessInd=0&act=112 Accessed June 3, 2020.
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