In my day job as the editorial director of a nonprofit renewable energy think-and-do tank, we talk a lot about driving and measuring impact. During those discussions, we maintain an important distinction between intermediate outcomes and ultimate impacts. Intermediate outcomes are often more immediate, easier to measure, and relate more directly to the day-to-day work that you do. Ultimate impacts, on the other hand, are about the change and impact your work is trying to create.
With ten days left in National Celiac Awareness Month, this distinction is an important one to keep in mind. When we push during this month to help raise celiac disease awareness, inevitably you come up against the question of how to measure awareness and whether it is increasing, staying the same, or decreasing. In my posts from last week, I used the prevalence of Google searches for terms such as “celiac” and “gluten” as proxies for awareness.
Google Trends search data is readily available and, when you dive into it, can provide some really intriguing insights. But at the end of the day it’s an intermediate outcome, not an ultimate impact. The same would be true if you decided to measure celiac disease awareness by the number of monthly pageviews on the websites of organizations such as the National Foundation for Celiac Awareness, Celiac Disease Foundation, Celiac Support Association, and others. A bump in web traffic for those organizations could be a good indicator of rising awareness, and that’s all well and good, but increased pageviews is not ultimately what National Celiac Awareness Month is about.
Eventually, we have to ask ourselves the tougher and more important question of celiac awareness for what purpose and to what ends? That’s where ultimate impacts come into play. Here, then, is my list of three ways we’ll know we’re really winning the celiac awareness battle:
1. Diagnosis rates
An estimated 1 in 133 Americans has celiac disease, but only 1 in 4,700 Americans has been diagnosed with celiac disease, according to the Celiac Disease Center at the University of Chicago Medicine. That enormous gap between the number of people with celiac disease and the percent of those people who’ve been diagnosed is a big problem, exposing that population to myriad serious health complications. If we’re successful in raising celiac awareness, that gap should start to close as more patients recognize the symptoms in themselves and seek out a knowledgeable physician to pursue possible diagnosis. (That’s the theory of change behind NFCA’s Celiac Disease Symptoms Checklist.)
2. First-degree screening
The first-degree relatives of someone officially diagnosed with celiac disease are at greatly increased risk for also having or developing celiac disease. Too often, though, I feel like I hear about someone’s celiac disease diagnosis happening in isolation. Even if their family is wonderfully supportive about the shift to a gluten-free diet, those family members don’t consider the diagnosis implications for their own risk. But if first-degree relatives become more aware about celiac disease, you’d hope to see a big increase in the percent of relatives who pursue at least a basic celiac blood panel screen. That would be low-hanging fruit, since as a nation we’d focus our diagnostic efforts on a group of people (i.e., first-degree relatives) at much higher risk than the general population for celiac disease.
3. Differential diagnosis by physicians
Celiac disease is a tricky beast because its symptoms can be so generic and potentially caused by any number of factors. GI problems? Joint inflammation? Osteoporosis? Headaches? If you’re not aware to consider celiac disease as one of the possible culprits, it’d be easy think symptoms like those would be caused by something else entirely (which is one reason why symptomatic celiacs go years before finally reaching a successful diagnosis). But if more and more primary care physicians are aware of celiac disease and its symptoms to then consider celiac in the differential diagnosis of their patients, we can increase the referral rate to gastroenterologists who’d ultimately confirm a diagnosis.
Admittedly, some of these are easier to measure than others. But one, five, and ten years down the road, when we’re again reflecting on National Celiac Awareness Month, these are the ways I believe we’ll know we’re driving real change, awareness has risen, and the celiac awareness “movement” has been a success.