Haug, C.J.: “Whose Data Are They Anyway? Can a Patient Perspective Advance the Data-Sharing Debate?” NEJM 376(23): 2203-2205. June 8, 2017.
“Digital patients,” public advocates, and the creators and users of initiatives such as PatientsLikeMe and Quantified Self don’t want to be passive observers and sources of research data. They use the power of the Internet to engage in their own care, interact with clinicians and fellow patients, create new knowledge, and suggest new ways of delivering health care. They believe in sharing data and experiences in order to help themselves and fellow patients.
Asked whether she worried about patient privacy in the event that trial data became widely shared, Sara Riggare (an engineer and doctoral student who researches models and methods for digital self-care in chronic disease) said the need for privacy “is not a constant. It varies depending on the context. If you have a life-threatening disease and need help, you do not care much about privacy. The question is also: How many people will die if we don’t share data? Personally, I know people whose lives have been saved because tumor data were shared.”
Riggare’s point is that receiving healthcare always implies a loss of privacy. Patients must expose personal information to get help, and that help is usually built on knowledge gained from experiences of previous patients who have revealed personal information. Patients want their data used responsibly, however, so the question is really: Who should control how data are distributed and used by others? The patients themselves? Doctors and researchers? Research institutions or governments?
Perhaps the solution to the data-sharing struggle lies in shifting data ownership and control to individual patients everywhere.
Reinhardt, U.: “Where Does the Health Insurance Premium Dollar Go?” JAMA 317(22): 2269-2270. June 13, 2017.
According to the report “Where Does Your Premium Dollar Go?”, an average of 79.7 cents per premium dollar is spent by insurers on healthcare proper and 17.8 cents on the insurers’ “operating costs,” leaving only 2.7 cents per premium dollar as profits.
We can think of the extraordinarily high overhead imposed on insured individuals and patients in the United States as the price they seem to be willing to pay for the privilege of choice among health insurers and, for each insurer, among multiple different insurance products. U.S. consumers seem so fanatic about this choice that to keep it, they have been willing to give up their erstwhile freedom of choice among physicians, hospitals, and other clinicians and healthcare facilities. Citizens of most other countries have made that trade-off in exactly the opposite direction.
Welch, H.G., Fisher E.S.: “Income and Cancer Overdiagnosis—When Too Much Care Is Harmful.” NEJM 376(23): 2208-2209. June 8, 2017.
Income has long been known to be an important determinant of health. In 2016, an analysis in which data from U.S. tax returns were linked with Social Security death records confirmed that higher income is associated with greater longevity throughout the U.S. income distribution. It found little evidence, however, that people with higher incomes live longer because they receive more medical care.
In fact, there are reasons to wonder whether wealthier people receive too much care. There has been a growing recognition among U.S. physicians that the conventional concern about too little medical care needs to be balanced with a concern about too much. People with higher incomes would seem to be at higher risk for overutilization—whether because of their greater ability to pay for services, their expectations or demands, or more aggressive marketing by the health systems that serve them.
Cancer screening is one area in which overutilization can cause harm, resulting in overdiagnosis and potentially unnecessary treatment—particularly for cancers for which the reported incidence is sensitive to observational intensity. Observational intensity refers to the combined effect of multiple factors: the frequency of screening and diagnostic exams (including physical exams, imaging, and laboratory testing), the ability of exams to detect small irregularities, and the threshold used to label results as abnormal.
Excessive testing of low-risk people produces real harm, leading to treatments that have no benefit (because there is nothing to fix) but can nonetheless result in medication side effects, surgical complications, and occasionally even death.
Winslow, R. “Mayo Clinic’s Unusual Challenge: Overhaul a Business That’s Working.” The Wall Street Journal, June 2, 2017.
Doctors at the Mayo Clinic, the 153-year-old institution that pioneered the concept of patient-centered care, considered it an ideal place to practice, one that wasn’t in much need of fixing. Dr. John Noseworthy, Mayo’s CEO, had a different view about the need for change. He saw declining revenue, he says, from accelerating efforts by government health programs, private insurers and employers to rein in healthcare costs as a looming threat to the clinic’s health.
So when surgeons asked for two more operating rooms to meet demand for open-heart surgery, one of the clinic’s major revenue sources, Dr. Noseworthy not only said no, he says, he also pushed them to redesign all facets of heart-surgery care and cut costs 20 percent.
The initial request, made eight years ago, sparked a years’ long revamp—part of a wrenching overhaul spearheaded by Mayo’s CEO that has tested nearly every aspect of the institution’s renowned system and that continues to this day.
The overhaul is well past the halfway point, and officials are seeing results of more than 400 projects aimed at squeezing costs and improving quality in services ranging from heart surgery to emergency-room waiting time. Dr. Noseworthy says dozens of major re-engineering projects have helped cut an accumulated $900 million in costs in the past five years.
Retooling projects included restructuring care for children with complex feeding, breathing and swallowing disorders. The effort reduced average time to diagnosis to four days from 210 days and cut the use of anesthesia and imaging tests by nearly half.
Topol, E.: “The Smart-Medicine Solution.” The Wall Street Journal, July 8/9, 2017.
Our health-care system is uniquely inefficient and wasteful. . . .(R)eal progress in containing costs and improving care will require transforming the practice of medicine itself—how we diagnose and treat patients and how patients interact with medical professionals. In medical training, private sector R&D, doctor-patient relations and public policy, we need to move much more aggressively into the era of smart medicine, using high-tech tools to tailor more precise and economical care for individual patients. This transition won’t be easy or fast—the culture of medical practice is famously conservative, and new technology always raises new concerns—but it has to be part of the solution to our health-care woes.
Smart medicine can transform the doctor-patient relationship. Most medical services today are still provided in the traditional outpatient setting of a doctor’s office. It takes an average of 3.4 weeks to get a primary care appointment in the U.S., and there’s little time allotted for each visit. Most doctors provide a minimum of eye-to-eye contact as they busily record the session on a keyboard.
The frustrations and inefficiencies of this system are obvious—and unnecessary. In the era of telemedicine consults, there is no reason to wait weeks for an appointment. For the same copay as an office visit, connection with a doctor can occur instantly or within minutes. With increasing use of patient-generated data from sensors and physical exam hardware that connects with a smartphone, the video chats of today will soon be enriched by extensive data transfer.
Indeed, obtaining patient data solely from the occasional office visit is no way to get a full picture of someone’s health or to assess their medical needs. As more people generate and maintain their own medical data, they will carry this information around with them, no longer leaving it in the exclusive domain of doctors.
Dr. Topol will be a keynote speaker at the 2017 Kaufman Hall Healthcare Leadership Conference in Chicago, October 18-20. Register now to secure your seat.
Selections by Nancy G. Haiman, Senior Vice President and Publisher
(email nhaiman@kaufmanhall.com)