For anyone who has looked at Apple’s March presentation, there is big news with regard to research (thanks to Seth for this information). Here’s a link to the March announcement –around minute 16 there is the research presentation: Apple March Event
Screenshot: Rationale for Apple iPhone for Research -Large Research Pool
The presentation makes it clear that Apple wants to dramatically increase the participation in research studies by leveraging 700 million iPhone users. Using an app called, “ResearchKit”, Apple has partnered with leading academic centers to help study Parkinson’s, Diabetes, Asthma, Cardiovascular disease, and Breast Cancer. For the GI community, I hope that someone will work collaboratively to add inflammatory bowel disease to the list.
Besides increased participation, iPhone-based research has the ability to lower research costs, collect data at frequent intervals, and allow a wider demographic representation.
A shorter ~4 minute video on a separate area of the website explains ResearchKit: ResearchKit video
NBC News provides a condensed summary along with the caveat that there will be concerns about accuracy of data collected with ResearchKit. That being said, most critics have not always appreciated the impact of previous Apple innovations.
Has someone from our national organization (NASPGHAN) or from ImproveCareNow started working with Apple? If not, this looks like a great opportunity.
In many areas of medicine, the need for increased certainty of cure and diagnostic certainty leads to other problems; sometimes, “the perfect is the enemy of the good.” While this happens in pediatric gastroenterology, the frequency is probably greatest in oncology. A recent terrific article in the NY Times by Peggy Orenstein highlights an epidemic of contralateral prophylactic mastectomy (CPM) in the care of patients with breast cancer.
Here are a couple of points and the link –Wrong Approach to Breast Cancer:
- According to a study published in the Journal of Clinical Oncology in 2009, among those with ductal carcinoma in situ — a non-life-threatening, “stage 0” cancer — the rates of mastectomy with C.P.M. jumped 188 percent between 1998 and 2005. Among those with early-stage invasive disease, the rates went up 150 percent between 1998 and 2003. Most of these women did not carry a genetic mutation, like the actress Angelina Jolie, that predisposes them to the disease.
- Overestimation of their actual chances of contracting a second cancer. In a 2013 study conducted by the Dana-Farber Cancer Institute in Boston, for instance, women under 40 with no increased genetic risk and disease in one breast believed that within five years, 10 out of 100 of them would develop it in the other; the actual risk is about 2 to 4 percent.
- Underestimated the potential complications and side effects of C.P.M. Breasts don’t just screw off, like jar lids: Infections can occur, implants can break through the skin or rupture, tissue relocated from elsewhere in the body can fail. Even if all goes well, a reconstructed breast has little sensation. Mine looks swell, and is a remarkably close match to its natural counterpart, but from the inside it feels pretty much like a glued-on tennis ball.
- The most comprehensive study yet, published earlier this month in the Journal of the National Cancer Institute, showed virtually no survival benefit from the procedure — less than 1 percent over 20 years.
- How can that be? Well, first of all, it is extremely rare for a tumor on one side to spread to the other. Cancer doesn’t just leap from breast to breast.
Related blog post:
Facts, “Misfearing” and Women’s Health | gutsandgrowth
Disclaimer: These blog posts are for educational purposes only. Specific dosing of medications/diets (along with potential adverse effects) should be confirmed by prescribing physician/nutritionist. This content is not a substitute for medical advice, diagnosis or treatment provided by a qualified healthcare provider. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a condition.
This week, a commentary makes a strong case for eliminating mammography (N Engl J Med 2014; 370:1965-1967): “Abolishing Mammography Screening Programs? A View from the Swiss Medical Board”
Here’s a link from the NEJM: nej.md/1hV8q0L
What is fascinating is how ingrained mammography has become in our medical culture and how most individuals believe that mammography is so beneficial. Take a look at the figure in the link to get a better perspective. While women think that mammography may save 80 lives out of a thousand screened, according to the commentary, the data suggest that 1 woman may be saved. The main problem: “for every breast-cancer death prevented in U.S. women over a 10-year course of annual screening beginning at 50 years of age, 490 to 670 women are likely to have a false positive mammogram with repeat examination; 70 to 100, an unnecessary biopsy; and 3 to 14, an overdiagnosed breast cancer that would never have become clinically apparent.”
If a well-established screening measure like mammography is not so beneficial, what else could be on the chopping block? As noted in a previous blog post (Do you know about the “Choosing Wisely … – gutsandgrowth), even the annual physical exam has been deemed a low-value service.
Another related blog post:
“There is More to Life Than Death” | gutsandgrowth
A terrific short perspective article shows how “misfearing” affects health care (NEJM 2014; 370: 595-597).
The author quotes one of her patients who when asked what is the number-one killer of women, replies “I know the right answer is heart disease…but I’m still going to say ‘breast cancer.'”
- “Tornadoes. Terrorist attacks. Homicides. The big, the dramatic, and the memorable occupy far more of our worry budget than the things that kill with far greater frequency.”
- “Misfearing” is a term coined by Cass Sunstein “to describe the human tendency to fear instinctively rather than factually” 274. Cass R. Sunstein, “Misfearing: A Reply” – University of Chicago
- “When I read Angelina Jolie’s New York Times editorial…She’s beautiful and brave, I thought, and I want to be like her. The cardiologist in me, however, said, ‘Oh no –will this make it even harder for us to help women believe they’re at risk for cardiovascular disease?'” My Medical Choice by Angelina Jolie – NYTimes.com
A graphic from this perspective article shows that mortality from cardiovascular disease is approximately ten times greater than mortality from breast cancer (if difficult to see, the graphic is available online http://www.nejm.org/doi/full/10.1056/NEJMp1314638?query=featured_home):
Cardiovascular vs. Breast Cancer Mortality in Women
In pediatric GI, families are often more worried about the treatment than the disease (e.g.. inflammatory bowel disease), despite the fact that the disease is often far more dangerous.
Take home message: (quote from author) “If we want our facts to translate into better health, we may need to start talking more about our feelings.” This is true not just in cardiovascular disease, but in all aspects of medicine.
Related blog posts:
This commentary helps explain some of the reasons for recent recommendations to drop PSA screening for prostate cancer and to stop mammograms for women ages 40 to 49 while at the same time showing how these decisions are not in fact ‘no-brainers.’ (NEJM 2012; 987-89).
With both decisions, the U.S. preventive services task force (USPSTF) focused on mortality data. For prostate cancer, the pivotal trial was the U.S. Prostate, Lung, Colorectal and Ovarian Cancer Screening Trial (PLCO) that showed no difference in mortality between a PSA-screened group and a control group. Besides detailing a few limitations of the study, the authors note that separate epidemiologic data show a 75% decrease in men presenting with advanced prostate cancer since the introduction of PSA screening. Furthermore, a European study showed advanced cancers were 40% more likely in the control group as well.
Patients with more advanced prostate cancer are prone to bone pain and urinary obstruction; whereas, patients who undergo unnecessary surgery (b/c prostate cancer was not going to kill them) may develop incontinence and impotence.
For breast cancer, similarly, identifying smaller breast cancers may allow more conservative therapy. This has to be weighed against increased anxiety, discomfort, and biopsies for those with false-positive mammograms.
“Basing decisions on the outcome of death ignores vital dimensions of life that are not easily quantified…It is neither ignorant nor irrational to question the wisdom of expert recommendations that are sweeping and generic. There is more to life than death.”
On a side note, one of the authors (Jerome Groopman) has written several books. My favorite of his: “The Measure of Our Days.”