(This post originally appeared on Forward Metrics)
A new buzzword is coming into vogue in the media: the consumerization of healthcare. Pundits define this term as a shift in the way the healthcare industry operates: from the traditional B2B mode to the one that focuses primarily on B2C interactions. Consumer advocates, in turn, point out that consumers are taking a more active role in important healthcare decisions. As a result of this trend, they argue, every healthcare company will have to become more consumer-centric, leading to what some enthusiasts have already dubbed “consumer-centric healthcare.”
In real life, so far the consumerization of healthcare has meant two major things. First, providers of healthcare products and services have begun paying closer attention to consumers’ behavior. Some pharmaceutical companies, for example, are adopting the “beyond-the-pill” approach: using web-based engagement tools, they show consumers how their lifestyles can maximize (or weaken) the effectiveness of provided therapies. Other companies take into account consumer and doctor feedback when designing protocols for clinical trials of new drugs.
Second, the consumerization of healthcare is manifested by the rapid proliferation of activist groups calling for a greater patient involvement in personal healthcare decisions. One of the most prominent players on this field, PatientsLikeMe, defines its mission as changing “the way patients manage their own conditions…the way [healthcare] industry conducts research and improves patient care.”
While any attempts to listen to the proverbial voice of the customer can’t be but welcomed—be it healthcare or any other customer-oriented industry—one ought to remember that the history of patient group involvement in healthcare decision-making process is not without controversy.
Back in the 1980s, the outbreak of AIDS brought to life a voiceful and influential advocacy on behalf of AIDS patients. Having launched an unprecedented in its magnitude public campaign, the AIDS patient advocates succeeded in persuading the U.S. policymakers to shift substantial amounts of NIH funds to HIV/AIDS research. The powerful infusion of taxpayers’ money helped rapidly identify the origin of the HIV/AIDS epidemics and then develop the life-saving treatments. Yet many critics bitterly complained that by receiving the amount of NIH funds that wasn’t commensurate with the number of HIV/AIDS patients, the program had siphoned much needed resources away from other, more important, public health needs.
Similar, albeit more muted, criticism has been voiced against generous NIH funding for breast cancer: critics argued that the amount of public money spent on this disease—as a result of active lobbying by dedicated patient groups– was vastly excessive, given the relatively low number of breast cancer patients.
It appears that the AIDS and breast cancer cases are not exceptional. In fact, they are part of a general trend: patient groups—often called disease advocacy organizations—actively influence federal funding in favor of “their” diseases. A 2012 study conducted by Rachel Kahn Best from University of Michigan follows how disease advocacy organizations lobbied Congress for a greater share of NIH funding. Using data on 53 diseases over 19 years, Kahn Best showed that for each $1,000 spent on lobbying for a specific disease, there was an associated $25,000 increase in research funds for this disease the following year.
What is wrong with that, one might ask? Well, the problem is that the amount of NIH funds allocated for any particular disease is now determined not by some objective parameters associated with this disease—for example, by the so-called burden of disease–but rather by the strength of a corresponding patient advocacy group and the amount of money it spends on lobbying members of Congress.
And when you have winners, you have losers too. In particular, Kahn Best points out that diseases affecting primarily women (except for breast cancer) and African Americans tend to receive lower levels of funding because of weaker lobbying. Besides, adequate funding isn’t provided to the so-called stigmatized diseases, such as lung and liver cancer, associated with patients’ “bad behavior” (smoking for lung cancer and alcohol consumption for liver cancer). Year after year, both diseases received smaller funding than would have been predicted based solely on patient mortality.
While welcoming public involvement in healthcare decisions, we as a society at large need to find ways restricting the influence of special interests—and money they bring along—on the healthcare decision-making process. There is so much at stake here.