The Wall Street Journal published two stories this week that point clearly where the future of medicine — and medical communications — is headed. On Tuesday, Jonathan Rockoff detailed the advantages of Pfizer’s development of a new non-small cell lung cancer drug, Xalkori, that has shown spectacular results in a narrow subset of lung cancer patients. It’s possible that only a few thousand Americans will develop the specific type of lung cancer, but smaller, targeted drugs — “nichebusters” — still presents a worthwhile opportunity for the company.
On the same day, Rockoff’s colleague, Ron Winslow, published an account of how a group of patients with spontaneous coronary artery dissection, or SCAD, found each other and — working together — pushed researchers to tap into their cases through a formal study. The end result is expected to be an expansion of what science knows about SCAD, a disease heretofore too small to generate interest in the research community.
The implications of these two pieces are clear: the march of science is slicing patients into smaller and smaller groups, and the information needs of those patients is getting larger even as the population of people in the same boat shrinks. The result is that, even in this era of informational surplus, small groups of patients may find the specific facts they need remain elusive.
Fortunately, the counter-trend is equally powerful, and the success of SCAD patients — along with other patient groups such as patientslikeme.com or the ACOR.org forums — are providing new and important information-sharing outlets for these narrow groups. But these groups are only work when people can find them. To truly unleash the power of online health, we in health communications need to do three things better:
- Patient support resources should be as much a part of what we provide to the media as press releases, disease-specific material and other background documents. From the outside, it can be difficult to establish the go-to locations online for specific groups of patients or caregivers, and raising the profile of such groups provides an enormous service to patients. (An example of where we are falling short: The WSJ SCAD story, while detailing a triumph, did little to point would-be participants to the very resources it discussed. For more information on the study, please see this page from the Mayo Clinic.)
- There must be an active effort to help make patients more web-literate, specifically in the area of health. My local hospital is running three dozen different classes and events in the month of September — everything from childbirth classes to cooking classes to relaxation/breathing classes — and not one of them is focused on teaching people to be e-patients.
- Communicators, especially those who work with industry, must come up with ground rules around direct interaction with these emergent communities. There is a great deal of opportunity to bring expertise and resources into the dialogue, but it’s important that “outsiders” adhere to strict standards of transparency. (Shameless plug: this topic is the subject of a SXSW panel that I’ve proposed: “Friending Pharma.” If you haven’t checked it out and voted, please take a look.)
The move to define diseases into smaller and smaller groups isn’t new, but it will have a profound impact on everything from study design to media coverage. And the sooner institutions and industries adapt to that reality, the quicker we can get to that future.
* Disclosure: WCG works with Pfizer, but WCG does not work on Xalkori.