What are those pie charts really telling us?
I was recently asked to comment upon a flier of unknown origin that was making the rounds on Facebook. On it were three pink circles, each with one lonely cut-out sequentially labeled 1.1% (DoD), 17.3% (Komen) and 27% (NIH). Written across the top in bold letters was: “How much breast cancer research money is spent on prevention? Way less than you’d think.” Whether the originator truly believes this or whether he or she is simply taking advantage of the fact that the pie charts can be misleading, I do not know. What I do know is that it’s time to set the record straight.
Pie Charts and the Common Scientific Outline
A few years ago I became curious as to why all pie charts had the same research categories so I did a little online sleuthing and soon stumbled across the International Cancer Research Partnership (ICRP). The ICRP was established in 2000 to help coordinate and compare research portfolios of various organizations. Contained within the ICRP is a Common Scientific Outline (CSO). The outline organizes research by breaking it down into seven research categories — the same ones you see on most research pie charts: biology, etiology, prevention, treatment, early detection, survivorship and scientific model systems.
If you go to the CSO link above, you will find not only these seven categories, but 37 sub-categories and more than 100 examples of the type of research that would fit into each sub-category. Virtually all research done today both in the US and overseas falls within these seven major categories and 37 sub-categories. Here’s how prevention fits in.
Pie Charts and Prevention (Category 3: Prevention)
The prevention wedge on the research pie charts falls into CSO category 3, appropriately labeled “prevention”. Research in this category is defined as: “Research to look at identifying interventions which reduce cancer risk by reducing exposure to cancer risks and increasing protective factors. Interventions may target lifestyle or may involve drugs or vaccines.” The sub-categories are:
- Interventions to Prevent Cancer: Personal Behaviors That Affect Cancer Risk
- Nutritional Science in Cancer Prevention
- Complementary and Alternative Prevention Approaches
But this isn’t all.
Pie Charts and Prevention (Category 2: Etiology)
Many environmental factors also play a role in the development of breast cancer — smoking, radon exposure, viruses, free radicals, genes and more. CSO category 2, “etiology,” is defined as research “to identify the causes or origins of cancer – genetic, environmental, and lifestyle, and the interactions between these factors. Etiology sub-categories are:
- Exogenous Factors in the Origin and Cause of Cancer
- Endogenous Factors in the Origin and Cause of Cancer
- Interactions of Genes and/or Genetic Polymorphisms with Exogenous and/or Endogenous Factors
- Resources and Infrastructure Related to Etiology
Thus we see that prevention is not only the wedge labeled prevention but also the vast majority of the etiology pie wedge. And there’s more.
Pie Charts and Prevention (Biology)
Category 1, biology, is defined as the study of “how cancer starts and progresses as well as normal biology relevant to these processes.” A significant portion of research in this category also feeds prevention because to prevent cancer, you must first assess the normal biology and determine what triggers the change that starts the cancer process. Biology’s sub-categories are:
- Normal Functioning
- Cancer Initiation: Alterations in Chromosomes
- Cancer Initiation: Oncogenes and Tumor Suppressor Genes
- Cancer Progression and Metastasis
- Resources and Infrastructure
Before going to the next category, I would draw your attention to the word “metastasis” in the fourth bullet above. This is the only mention of stage IV disease in a major or sub-category. More on this below under Pie Charts and the Missing Piece – Metastasis.
Pie Charts and Prevention (Scientific Model Systems)
Category seven is scientific model systems, defined as the development of new animal models, cell cultures and computer simulations and their application to other studies across the spectrum of cancer research. These models are needed for all areas of research, including prevention and thus a portion of category seven is also prevention.
Indeed, when it comes right down to it, every aspect of research will contribute to prevention since understanding what is different between any tumor cell and a normal cell adds information that could be used for prevention of the tumor in the first place. But even without these more general-use subcategories, prevention directly receives the lion’s share of all breast cancer research done today.
Pie Charts and the Missing Piece – Metastasis
As to metastasis? Initially metastasis wasn’t even mentioned in the CSO except for one entry “long term morbidity.” That incredibly unfortunate term remains today and is listed under category six “Cancer Control, Survivorship, and Outcomes Research,” sub-category “Patient Care and Survivorship Issues.”
A very few years ago under category one, biology, “metastasis” was finally added to the CSO, appearing as one part of the sub-category “Cancer Progression and Metastasis” with the caveat “optional.” Recently the word “optional” was removed; however, numerous problems remain.
- Metastasis, which takes the lives of roughly one-third of cancer patients, does not have its own category in the CSO.
- Metastasis does not even have its own sub-category, but rather a shared sub-category.
- The examples of metastasis research make it clear that research to prevent or predict metastasis, which is very different than research to stop and/or reduce a metastasis that has already occurred, qualifies as metastasis research. Thus research to study the already metastasized cancer in an effort to determine ways to end death for the stage IV patient or even significantly extend his or her life can be completely ignored but still allow the organization to claim it gives a percentage of research to “metastasis.”
Personally, I’d love to see breast cancer prevented. But that hasn’t happened. And even if it happens, it won’t happen for a very long time because breast cancer is not a single problem, it is multiple problems. Breast cancer won’t be stopped by one vaccine or one solution; it will take many vaccines and many solutions and perhaps even then won’t succeed. In the meantime, people are continuing to be diagnosed with breast cancer at increasing rates. And at least 30% of those are continuing to metastasize and 97-98% of those are continuing to die. The metastatic breast cancer death rate has not changed in decades and it won’t change until the research funding issue is resolved.
Remember, no cure has been found for HIV. No cure has been found for diabetes. No cure has been found for many diseases. But smart, compassionate people had the insight to realize there were various ways to stop death. They didn’t insist on prevention; they insisted on life. And they made it happen. Now HIV, diabetes and other serious conditions are not a death sentence. Those living with these disease have long, productive lives. Prevention is not underfunded; it is overfunded. So let’s start talking about proportionate research so that everyone has a chance at life.
~ CJ (Dian) Corneliussen-James