The Digital Doctor: Hope, Hype, and Harm at the Dawn of Medicine’s Computer Age. Now I've just completed H Gilbert Welch's Less Medicine More Health: 7 Assumptions that Drive Too Much Medial Care with its even less sanguine view of the possibility of generating a lot more data on one's health.
It's good to read all three to get a sense of the developments in the brave new world of digital health (see Healthcare Analysis: Doctor vs. Device) and why it's not all good. When someone first told me about Welch's book,I envisioned something like this:
Dr. W: One of the best things you can do to improve your health is to engage in regular exercise. My father, for example, walked 2 miles to and from work each day.
Random person: That's great, how old is he?
Dr. W: He died at 60 from pneumonia he developed after becoming sick from colon cancer.
Random person: ??
That may be your intitial reaction, but if you think about it, you realize his father's early death doesn't disprove his general guideines for health, which also include the old wisdome of "everything in moderation and nothing in excess." Dr. Welch wasn't claiming that anyone who walks is guaranteed a long life. It is just one of the factors that contributes to good health. Cancer can happen to anyone, and that doesn't disprove the fact that walking is good any more than the smoker who lives to 100 proves that smoking is not at bad for you. People have to remember that there are general rules and loads of exceptions. Dr. W. bets on the rules and what you can do for your health without taking exteme action or obsessing over every bit of health data you can access.
He certainly offers a contrast to Topol's celebration of increasing patient access to their health data with technology. For example, Topol was thrilled with the fast blood lab analysis offered by Theranos, which has since the book's publication fallen very much out of favor with the public and the law. Topol also consider Angelina Jolie effect a very good thing, a sign of women taking charge of their health. While Welch doesn't say the star was wrong for her own situation, he argues that that kind of testing and pre-emptive surgery doesn't make sense for most people.
Welch devotes a great deal of his book to the downside of too much data, not just because of the irrevelant noise, but also because the information it provides can prove more harmful -- in raising anxiety level and prompting invasive actions that don't really improve one's health or wellbeing -- than helpful. This is particularly the case with breast cancer which has been selling "early detection saves lives" to push yearly mammograms on the entire female population, screenings that often raise alarms, prompty biospsies, and sometimes lead to removal of what would not have spread to pose a real threat in any case.
Some of these issues have already been explored in books like Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health (Oxford University Press, 2011). They also have gotten those in the know to change the recommendations for woemn's mammograms. Nevertheless, the most recent govenremnt guidelines for women's health still push that outdated information in its guidelines that allow for regular mammograms for all women 40 and up and that states unabashedly, "The good news is that mammograms can help find breast cancer early. Most women can survive breast cancer if it’s found and treated early." This dangles a false promise of saved lives that often were not in danger at all and completely ignores the harm that can result, something more and more experts are admitting as studies like this one covered by PBS, "One in three women may receive unnecessary mammograms, study says" come to light.
What's true of screening for breast cancer is also true for other forms of screening that lead to invasive tests and treatments in the attempt to "fix" problems that would not cause any ill effects if just left alone. But even when the screening doesn't necessarily entail harm, Welch says, we should ask if it does actual good. This is important to know because the right to say "no" to a suggested test because there is no benefit to be derived because the information is not going to be actionable in any case is empowering for patients or their caregivers.
Here's a case in point: a couple of years ago, I brought my son in to a doctor when he had signs of a cold just to be sure it wasn't strep or something else that would require medication. The doctor decided to also test him for flu. Though both rapid tests were negative, he wanted to be sure and put in for overnight lab test for both. They, too, were negative. Now here's the thing: it may have made sense to do the strep test in case the rapid was inaccurate because someone with strep should take antibiotics, but the extended flu test made no sense at all because the results take days, and by then 1) it's too late to try to take Theraflu or any other prescribed medication to mitigate symptoms and 2) you'd know you'd have the flu or not yourself at that point based on the extent of your suffering. So the doctor had put in for a test that cost over $10
It's very hard for some of us to resist the recommendations of doctos for tests, treatements, etc. That's because we have to break through our own biases that convince us the doctors know what they're doing and always acting in our own best interests. That's not to say that doctors are completely ignorant or that they are deliberately jacking up their incomes with more procedures (though some are or do them to cover themselves in case of suits) but that they are conditioned to automatically run these tests and make the standard recommendations in a one-size-fits-all approach to medicine. It's up to individuals to get informed and empowered.