Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.
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Myeloma diagnostic testing has come along way since my initial diagnosis in early 1994. All aspects of diagnostic testing have improved-
all forms of testing convey more specific information about the patient’s blood cancer than ever before.
The most significant change between then (1994) and now (2024) is the EHR or electronic health record. In 1994 my EHR was the exclusive purview of my oncologist and his hospital. Now, in 2024 all of my myeloma diagnostic testing results are in My Chart – a password protected electronic file that my hospital submits my tests to within 24 hours of the test being taken.
The downside of the 21st Century Cures Act requiring hospitals to send patients their myeloma diagnostic testing information is that patients don’t know what to make of their results initially.
The upside of myeloma diagnostic testing information in a secure online location that I can access anytime is that I can refer to my information again and again as I learn more and more about my incurable blood cancer.
Benefits:
Risks:
Having access to my myeloma diagnostic information may seem insignificant. In order to understand the importance of this reality you have to understand that I had no way of accessing my myeloma diagnostic information from my diagnosis in January of 1994 through the end of my active treatment in 1997.
I had to submit a request to my hospital and pay for a hardcopy to be photocopies. A process that took weeks. Instant online access or weeks for a photocopy. The difference is remarkable.
Have you been diagnosed with multiple myeloma? Do you have questions about any of your diagnostic testing information? Let me know- David.PeopleBeatingCancer@gmail.com
Thanks
David Emerson
“After implementation of the 21st Century Cures Act in 2021, 75% of cancer test results were viewed by patients first compared with 37% in 2017, a trends analysis shows…
After the Cures Act, 75% of test results were viewed by patients before the ordering clinician, almost double the views in 2017,” the authors wrote. “How patients with cancer receive test results has implications for practice quality,” the study authors explained, noting that although “m ost patients prefer to receive test results immediately through the portal,” patients also “report increased anxiety when receiving abnormal results this way.”..
“Designed to promote patient access to electronic health information, advance innovation, and address information blocking practices, the 21st Century Cures Act went into effect on April 5, 2021. This bipartisan legislation mandates that all medical test results now be released immediately to patients.
Since that time, scenarios like the one above occur all too regularly in my practice. In the first month alone, two different patient families devoted hours to researching the term white matter changes in the reports of brain magnetic resonance imaging scans of their elderly relatives. In both cases, this relatively common and medically insignificant finding obscured the positive news the scans conveyed: no evidence of brain metastases…
Clinicians are continually asked to see more patients in less time. When we devote time to reassuring worried patients and caregivers that an abnormal serum chloride or mean corpuscular hemoglobin concentration is not clinically meaningful, there may be less time to discuss truly important matters, such as reviewing prognosis, providing education on treatment adverse effects, or managing symptoms…”