The opposition to healthcare reform is fanning fears of rationing as a way of controlling escalating costs and broadening access. A better use of our collective energies would be to identify and eliminate the waste and harm produced by the current healthcare system. We are well aware of over 1 million hospitalizations and the nearly 100,000 deaths associated with hospital-acquired infections, at a cost of approximately $40 billion annually. We have this information partly because the data infrastructure within hospitals exists to track these events. Many more potential adverse consequences of healthcare remain unrecognized and unquantified, particularly those that occur outside of hospitals, where the majority of healthcare takes place. We hear distant echoes of alarms sounded by researchers, but because there is no integrated picture of the full magnitude of the harm, we remain complacent. We must admit that harm exists, develop systems to track and quantify it, and finally eliminate it. The time for this is now; here is why.
Why would harm be pervasive in what has been called by some “the best healthcare system in the world”? Theoretically, risk aversion, by promoting a culture of over-testing, over-diagnosis and over-treatment, is fraught with paradoxically noxious potential. Beyond theory, an example of how the “better-safe-than-sorry” approach can be detrimental plays out in screening mammography. Despite the fact that the US Preventive Services Task Force says to commence breast cancer screening at the age of 40, the risk and benefit balance of this recommendation is unclear. A recent study from Europe, for example, noted that for every 2,000 women screened over a 10-year period, one cancer death is averted. The trade-off is that 2-10 other women receive invasive and toxic treatments for a cancer that would not have become life-threatening. What is even more disturbing is that we do not know how many of these 10 women are consigned to life-long illnesses or an early death due to the complications of this unnecessary treatment. Similar concerns exist for prostate cancer screening and for many other diagnostic and therapeutic modalities we employ every day: the drug and device approval process focuses more on short-term benefits and less on long-term risks. Therefore, the full extent of the harm remains unknown.
Until recently, the heretical talk of harmful effects of healthcare was relegated to the fringes of the medical world. Fortunately, this conversation has now penetrated into the mainstream, with a paper in a recent issue of The New England Journal of Medicine laying out the research framework to explore this problem. Unfortunately, the research agenda, which still requires much clarification and planning, though harnessing the will to fill this knowledge gap, will be hard-pressed to find a way. This is because of the heterogeneous and still mostly paper-based medical record-keeping by the majority of US practitioners, precluding meaningful recognition and aggregation of relevant data.
This lack of knowledge gives the public a rosy view of healthcare: high benefits with virtually no harms. Getting a handle on the full picture of the balance of benefits with harms and waste, however, is critical for optimizing outcomes. Although data to quantify it are presently scant, the timing of the emergence of this research agenda, coincident with the major push to adopt electronic health data platforms along with the recent allocation of funding to the comparative effectiveness research (CER), is fortuitous. Electronic data, if captured accurately and uniformly, are a robust source of complete information on long-term outcomes, and the well-established framework for CER is a natural fit for incorporating these data to inform policy decisions.
If healthcare reform is to achieve its goals of universal access to good quality healthcare at a reasonable price, we must not miss this opportunity to align the research into harm with our ability to generate useful data from electronic sources to feed smart policy decisions through CER. Although historically our healthcare system has enjoyed very little integrated planning, this is an opportunity to draw up a sensible blueprint for a successful future. If we do it right, we will be not only saving money, but also addressing such an important societal concern as human lives.