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To the Editor As a cancer patient and advocate, I was happy to read the Editorial by Back1 discussing the study by Gogineni et al2 published in JAMA Oncology on February 12. It is comforting to know that a study was performed to address this issue as opposed to allowing the stereotype to persist that patients cause financial strains on the health care system with our requests for “unnecessary” treatment. As a multiple myeloma patient (6 years postdiagnosis this St Patrick’s Day), I can attest to the value of the partnership between an attentive, inquisitive medical professional and an informed patient as it relates to proper diagnosis, treatment, and follow-up care.
During a routine physical examination, my family physician saw something out of the ordinary and performed an extra test. That potentially unnecessary test led to my cancer diagnosis. Without his scientific inquiry and thoroughness, any care that I received may have come too late and proven to be futile.
After a few months of successful treatment with a pill-based regimen, I was advised that I may need an autologous stem cell transplant. I was not convinced and disagreed, but my oncologist listened to my concerns and helped me obtain a second opinion. Now assured after being armed with information, I decided to undergo the procedure. Since then I have not registered any M spikes and I am as close to being cured as one can be from this chronic but manageable disease.
Increased use of Big Data and social media allows for more communication of timely information throughout the entire medical value chain—especially between physician and patient. All parties will have to adapt to changes in technology to create personal and personalized care. Anything that creates a stronger 2-way relationship between patients and the physicians who treat us will break down barriers and allow cancer patients like me to have hope that we will endure.
Patients are not demanding. We, the unwilling consumers of health care, are merely becoming more educated about our conditions by the day. Our only “demand” is that we and our physicians have access to and choice in the care to be used on our behalf. That creates true value in health care.
Corresponding Author: Robert M. Tufts, BA, MBA, New York University, 7 E 12th St, New York, NY 10003 (email@example.com).
Published Online: May 28, 2015. doi:10.1001/jamaoncol.2015.1108.
Conflict of Interest Disclosures: Mr Tufts has received honoraria from the Center for Medicine in the Public Interest, has appeared at company expense at the Celgene annual sales convention, and is cofounder of My Life Is Worth It, which advocates for patient and physician access to treatments and is funded by the Center for Medicine in the Public Interest. No other disclosures are reported.
Additional Information: Mr Tufts is a former Major League Baseball pitcher, San Francisco Giants and Kansas City Royals, 1981 through 1983.
Tufts RM. The Demanding Patient Revisited. JAMA Oncol. 2015;1(4):543–544. doi:10.1001/jamaoncol.2015.1108
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