I’ve separated out my audience segmentation into three categories: those who research orphan diseases, those who fund that research, and policymakers who promote the research and research funding. Three topics I will consider include traditional segmentation variables, which include demographics, geographics, psychographics, and behaviors; stages of change, of which pre-contemplation, contemplation, and action are the most important for targeting by social marketers; and diffusion of innovation, in which the early and late majority are the most important social marketing targets.
Some notes: I added the policymakers category based on the successful integration of new legislative policies on the pharmaceutical industry in 1983 to increase the manufacture of drugs that treat orphan diseases. (From what I have researched so far, no current similar legislation exists for orphan-disease researchers and funders.) I have also lumped researchers and funders into the same category for the purpose of this blog because the two overlap somewhat.
Researchers and Funders
Demographics for researchers and funders spread into several categories. First, large labs versus small labs: large labs may be able to fund niche projects (i.e., orphan diseases) because they have stable funding from larger projects. Moreover, more people in the lab may equate to those individuals having more time or undivided attention to find funding from additional or specialized sources. Finally, they may be more likely to take risks with projects in new fields because, as the proverbial colloquialism goes, they don’t have all their eggs in one basket. Don’t discount small labs, however: they may still be able to find funding from niche sources, especially if they’re doing novel work. (For example, my principal investigator, Rick Sifers, at Baylor College of Medicine successfully got long-term grant funding from the Alpha-1 Foundation because his lab studied alpha-1 antitrypsin deficiency in depth, and because he was a proteomics, not genetics, researcher.)
Second, it is important to consider income demographically. For researchers whose funds come from multiple resources, funds for multiple unrelated projects may be greater overall, but the amount allocated to the study of an orphan disease might ultimately be less overall. Meanwhile, funds for only one niche project may be more devoted to that project, but loss of funds (for example, by non-renewal of a grant) may have more of a negative impact on the project or may stall it altogether. When research is funded by few sources, loss of those sources is, as above, likely to significantly impact the project’s study in a negative fashion.
Geographically, there are several things to consider for researchers and funders. Certain areas of the country may be more likely to receive research funds than others (for example, progressive states like California may be more successful than more traditional ones, like Montana). Urban versus rural areas are also important: research facilities in large urban areas (like Boston or Houston) may be more likely to receive funds than those in more rural settings (like Knoxville). Institution type is another important consideration. Depending on the researcher’s specialty and the goals of the funder, more funding and research may be devoted to industrial, academic, or government settings.
Psychographically, institutes with long track records (for example, Oak Ridge National Laboratory, which has generated top-notch science in a breadth of disciplines since its founding in 1943) may be more likely to receive funds than startup companies, although some funders do take risks in the risky world of orphan-disease research with startup companies because they are often more daring and typically have younger staff.
Behaviors to consider with researchers and funders include how ready and/or dedicated is the researcher or funder to the study of a particular or multiple orphan diseases, as well as how competent the principal investigator, research staff, and knowledge of grant-writing processes the key players are. Considering dedication and readiness particularly, is the PI dividing his or her time, focus, and energy between multiple projects or just this one orphan disease? If the answer is multiple projects, how much devotion does he or she have to this particular project? As with many things in life, experience at this stage is very helpful, but dedication and resourcefulness may make up for it if experience is lacking.
Regarding stages of change, researchers and funders in the contemplation stage may consider the works of other researchers and funders studying other orphan diseases, as well as what incentives exist for the research and funding of these diseases. In the preparation stage, researchers have decided to study the disease and funders have decided to fund that research and are deciding what steps to take next, including implementing a plan for when research and securing of funds will take place and who will do what. Finally, in the action stage, the researcher is studying the orphan disease itself (for example, its mechanisms of action, treatment, etc.) and the funder is dispensing grants and other funds to the researcher(s).
Researchers and funders in the diffusion of innovation category already have at least some interest in or knowledge of the behavior the social marketer would like them to change. The early majority may be somewhat skeptical about the research or funding of orphan diseases but are in tune with the early adopters and will ultimately go along with the crowd, while the late majority is even more skeptical and takes more convincing before they too join the majority in performing or funding orphan disease research.
Policymakers
Policymakers push for the legislation of orphan disease research, such as financial and other incentives to make research and funding of orphan diseases more desirable. Examples of such measures done to the pharmaceutical industry in the Orphan Drug Act of 1983 included tax breaks and quick paths to FDA approval of novel drugs; it is likely that similar measures could continue here.
Regarding traditional segmentation variables, demographically, policymakers are likely to be politicians who may or may not (but probably will) be swayed by or receive knowledge of orphan diseases by lobbyist groups or orphan-disease foundations. Geographically, policymakers at the state or (especially) national level are more likely to pass effective legislation than those at the county or city levels. Psychographically, policymakers are likely to be upper middle class and have Type-A personalities who may or may not have a sense of benevolence (or, less optimally, a desire to line their own pockets or win over voters). Behaviorally, policymakers with a background or interest in science, research, health, or medicine will have better knowledge of the problem, but will still need to weigh the benefits and costs of legislating funding for orphan-disease research against other competing projects.
Regarding stages of change, policymakers in the contemplation phase are considering passing a bill promoting the funding and research of orphan diseases and are still gathering information from lobbyist and other groups, or doing their own research. In the preparation phase, the policymaker has decided to send the bill for a vote and is drafting final legislation for that bill’s passage. In the action phase, the policymaker has pushed for the bill to pass (although this is not fully in his or control) and may be persuading or encouraging his or her fellow legislators to pass the bill as well.
Finally, in the diffusion of innovation category, the early majority of policymakers will have studied orphan-disease research and the policies favoring its funding, but may still be skeptical. They may have some benevolence (or, as mentioned previously, a desire to win more votes) and, because they are more in tune with early adopters of the practice, will eventually decide to push for the legislation promoting orphan-disease research and funding. The late majority are more skeptical still, may have a sense of less benevolence, and while they are not forced to adopt the practice (like laggards), they’re still fairly resistant. As the idiom goes, you can lead a horse to water but you can’t make him drink, but if he’s smart (unlike the laggards), he’ll do it anyway before dehydration wins out.