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Spinal Cord Injury Research: The Reality or Womenby Phil Klebine The federal government awards millions of dollars each year to conduct spinal cord injury (SCI) research. These "grants" are used by universities and organizations throughout the United States (US) to conduct research activities that have the potential to improve the quality of life for individuals with SCI. The success or failure of most research activities is published in professional medical journals. These articles allow researchers to report their findings to other researchers. This way, they can avoid repeating activities that fail and build upon research that is successful. As an individual with SCI, you are likely to live a much longer, healthier life because of improvements in medical treatments gained through research. Most results from SCI research have been published since 1966. In all, there have been well over 14,000 SCI related articles published in major medical journals over the past 40 years. Some articles reported findings from animal research, but most articles have reported research results on a group of people with SCI or a single case report of an individual with SCI. Although most SCI research includes both men and women as participants, some gender-specific research is needed for unique health and wellness issues. For example, men and women have different sexual, reproductive, cardiovascular issues and many other different health and wellness concerns. Therefore, some research is needed to study issues that only impact men, and some research is needed on issues that only impact women. The National Spinal Cord Injury Statistical Center estimates that there are about 11,000 people diagnosed with SCI each year and about 200,000 people with SCI living in the US. Women represent about 20% of all new cases each year, but they make up more than 20% of the SCI population because women generally live longer than men. In fact, women make up an estimated 25% to 30% of the SCI population. This means the total number of women with SCI currently living in the US may be as many as 60,000. Are women "fairly" represented in SCI research? One way to answer this question is to look at the total number of published articles that include information limited to either women or men. Because women represent at least 25% of the total SCI population, it is "fair" to think that about 25% of these articles report on information limited to women. Because men represent about 75% of all individuals with SCI, it is "fair" to assume that about 75% of such articles report on information related to men. However, the reality of research activities is alarming for women with
SCI. The Table breaks down the articles published in major medical journals
since 1966. Over the past 40 years, there have been 2,626 published articles
that include information limited to either men or women. The table shows
that the total number of published articles steadily increased over the
past 40 years. When the articles are broken down to each gender, you see
that 2,545 out of 2,626 of the published articles involve only men with
SCI. In contrast, only 81 out the 2,626 articles include information only
on women with SCI.
The Graph below is also based on the 2,626 published
articles that include information limited to either men or women. The graph
shows that 1% of articles focused solely on women's issues during the 1970s.
The percentage then grew to 2% in the 1980s, and it more than doubled to
5% during the 1990s. Since then, however, the percentage of published articles
devoted to women's issues has remained steady at 5%. This averages out
to be only about 3% of the total published articles since 1966.  The table and graph clearly show that women are under represented in
SCI research. Despite the fact that at least 1 in 4 people with SCI are
women, only about 1 in 32 gender specific articles include information
on women's issues. Despite the fact that women currently represent more
than 25% of the total SCI population, only 5% of current gender specific
articles include information on women's issues.
Although it is clear that women are not "fairly" represented in SCI research when compared to men, the reason for the lack of research is not as clear. For the most part, researchers probably find it difficult to get enough women to participate in a study to accurately represent the total population of women with SCI. In other words, it is simply easier for researchers to get men to participate in research because there are more men with SCI than women. However, there is really no good reason for the lack of research when it comes right down to the facts. There are more men with SCI than women, but there are more than enough women available to participate in research. It may be difficult for one facility to enroll enough participants to accurately represent the total population of women with SCI, but two or more facilities could collaborate to get enough participants for a valid study. If there is to be a "fair" amount of research devoted to women's issues, it is up to women with SCI to make it happen. Researchers and funding agencies have been aware for a long time that there is a lack of research into women's issues. If you look at the table and graph, there has not been an increase in the percentage of research devoted solely to women's issues in the last 13 years. To increase the number of research activities for women with SCI, women need to call upon researchers and funding agencies to make women's issues a priority. You can start by contacting universities and organizations that conduct SCI research. There is a good chance that research is probably being done in the same center where you did your rehabilitation. You can contact funding agencies such as the Centers for Disease Control and Prevention, Paralyzed Veterans of America, and the National Institute on Disability and Rehabilitation Research, which funds this newsletter. You can also contact your representatives in the US congress. No matter who you contact, ask them to increase funding for research into the unique health and wellness issues for women with SCI. (see Funding Resources below) If you are a woman with SCI, you can also help yourself by getting involved
in research, if you are not already participating. You can participate
in research that includes both men and women, and you can participate in
research activities that only impact women. One thing is a fact: your participation
will make a difference! |