As I’ve written about previously, when I was a college student, I worked as a research assistant for an orthopedic surgeon who was completing a research fellowship at the University of Washington working in the biomechanics lab at Harborview Medical Center. He was doing a study on the use of an oscilloscope in assessing fracture healing in tibiae. He had a device that made a little thump on the skin over the tibia, thereby making it vibrate. A couple of readings were taken and recorded.
I have always maintained that it is not fair to expect smart people to automatically have professional skills with which they’ve had little or no training. So, I am not putting down the medical profession when I note that an M.D. is not a research degree and it was very clear that this very skilled and compassionate physician, did not always know what he was doing from a research methods standpoint.
One day, he and I were taking readings. There were some he didn’t like. He said, “Those a spurious.” And then he deleted them. I was shocked and said, “You can’t do that!” He repeated his rationale and looked mighty nonplussed for someone who had just DESTROYED DATA. It is true that most things in life are not normally distributed and even when they are, there will be outliers. But outliers count. They can’t just be dismissed. They are still part of the sample, the sample that is designed to represent a larger group.
A lot of the time we spend on defining what is normal, what is average. A average, or mean, is a measure of central tendency. It measures the middle. But sometimes the mean does not reflect the middle. Take home prices. Have you ever noticed that people talk about median, not mean, home prices? That’s because wealthy people tend to live in much more expensive homes, with prices outlying the general distribution. These outliers, or extreme scores, are described to exert too much leverage on the mean. Let’s say that all of the houses in your neighborhood are worth $200,000-$300,000 except for one, which is worth $2 million. The mean is going to end up being higher than the price of all but one of the homes and is going to be substantially lower than the highest one. The mean is not very meaningful so a median, the actual middle point of the distribution is used instead. Now the outlier house is not meaningless. There’s some meaning around someone having a lot more than everyone else. That says something. And the majority of the house prices mean something, too. One cannot get a complete picture without looking at both the norm and the exceptions.
If you are still with me on this statistics post, you know that I’m going to apply this to something else. You would be right. There is a lot of discussion in the breast cancer community about what words, experiences, and group best represent us. Sometimes we are talking about educating and changing our culture. We talk about the implications of words for funding, physician/patient relationships, and societal support for individuals with breast cancer. These conversations are very important.
Then there are the times we apply the mean to ourselves as individuals. Sometimes that fits and sometimes it doesn’t. Sometimes we apply our individual experiences to the group. Sometimes that fits and sometimes it doesn’t. Sometimes we want to be the average. Sometimes we want to be the outlier. I had a kind of breast cancer that has a good prognosis based on the type, stage, estimated aggressiveness, and the results of genetic testing. I am hoping very much to be an average breast cancer patient. I don’t want to be an outlier. My friends with metastatic cancer most commonly want to be outliers. They want to live longer and with a higher quality of life than the typical patient.
Some of the more controversial writings and interviews on breast cancer have occurred when an outlier case is treated as the typical case. Melissa Etheridge comes to mind. She is entitled to her own individual opinion about what caused her cancer and what will keep her healthy. She has freedom of speech, even as a famous person, and I have the freedom to think that she is living her life on a foundation of likely erroneous beliefs. But it is her life. Good journalism is supposed to present a story in context. When an individual expresses an outlier belief about the prevention and treatment of a deadly disease, there is a responsibility to present other view points, in particular, to interview an expert in the field. That provides context and a representative story.
Stories about individuals are often more interesting because they are less abstract. They seem so much more real than statistics. But as real as individual anecdotes are they often do not represent the group.
Breast cancer is not always interesting. Some of us are suffering in a way that is not good for print or t.v. Not all of us feel like “survivors” or “warriors” or “fierce”. Some of us do, some of us do not. Some of us believe in the power of prayer, the power of positive thinking, and some do not. For some, mastectomy feels like an amputation, for others not. We all deal with this disease in our own way. We feel losses in our own way.
It is unrealistic to expect all cancer patients to understand the complexities of these diseases, to cope with them, and also to EDUCATE the public. Some people are able to do this, but others are not. Some people argue that public figures have a responsibility to the public to educate because they are influential. This assumes that they have the skills necessary to educate. It is, however, realistic to expect people whose profession it is to provide health information to do so, and the blur between news and entertainment as well as news and disease commercialization, troubles me greatly.
We may be the mean. We may be outliers.
Every one of us is real.
We are all part of the group.