Whipsawed by the Long Tail: How Patient Advocacy Groups May Distort Our View of Patient Customers

Advocacy groups are vocal and powerful, and you don’t want them working against you. But they don’t necessarily have the same perspectives or agendas as less connected patients.

The industry began looking tentatively at patients as customers two decades ago but it is only since the Web created virtual disease communities that we’ve been able to find and talk with patients who have obscure diseases. This is occurring just as the industry is, ironically, being forced to look for new commercial opportunities in diseases that were once regarded as not profitable enough to target in the old industry block-buster model.

The list of patient advocacy groups is long and growing now that the Web has enabled patients with exceedingly rare diseases -- for example, alpha-1 antitrypsin deficiency or rasopathies -- to assemble and find their collective voice. Current estimates place the number of “rare” diseases at about 6,000 (JAMA, June 8, 2011).


Web access has also transformed the model of traditional advocacy groups (e.g., American Heart Association, American Cancer Society) to a true community of patients who speak more directly through the organizations that represent them. The Internet makes it possible to find not only “the long tail” of small markets for commercial products (Chris Anderson, editor-in-chief of Wired), it allows isolated, geographically dispersed sufferers and treaters of better-known, more visible diseases to share stories, pool resources, and build clout.

Concentrated clusters of advocacy groups are tantalizing targets for pharmaceutical and biotech manufacturers because we gain relatively easy, inexpensive access to relevant patients as both marketing research informants and as partners for public relations and legislative lobbying. Indeed, drug manufacturers have invested heavily in collaborating with advocacy groups to the point that, in many cases, industry is the biggest supporter. An article by New York Times Reporter Gardiner Harris notes that the majority of donations made to the National Alliance for Mental Illness come from drug makers.

Industry partnerships with patient advocacy groups are necessary and valuable, but they should not be assumed to be representative of the broader population of patients.

A community of people who talk a lot and form a political perspective on the world can develop orientations that are not necessarily representative of others who don’t. People who join advocacy groups may be more prepared to be defined by their disease than others, and that characteristic may have different implications for approaches to therapies, etc.

As a consequence, disproportionate reliance on advocacy groups, without corresponding investigation of the perspectives and priorities of the larger numbers of patients navigating their disease on their own, can lead us to abandon outreach to patients who are less easily accessed. And, by definition, advocacy group members are challenging to use as proxies for newly diagnosed patients who have not been in daily or weekly virtual dialogue with other patients and healthcare advocates.

By way of example, research comparing advocacy group members to representative samples of respective patients has yielded opposing conclusions about the value of patient services provided by pharmaceutical and biotechnology product manufacturers. 

The Web has certainly democratized our commercialization efforts by enfranchising patients whom we might never have heard from. But we need to be mindful that large groups of people, however they assemble, become political entities. Self-selection bias is still present whenever we tap into any community of “volunteers” and their perspectives can be shaped by community interaction.

When we attempt to forecast demand for new therapies or preferred methods of new drug delivery by vetting them through patient members of advocacy groups, we may find unrealistic expectations about those therapies, over- or understatement of interest in new options, and dismissive attitudes toward support services with real potential to advance therapy adoption and persistence.