In blog posts and other documents, the Lipedema Foundation sometimes presents data on growth in the number of Lipedema research publications. For example, a statistic we often like to cite is that 50% of primary data papers on Lipedema have been published in the past 5 years. This information can be helpful to put in context the current state of the field as well as its rapid growth. There are several tools, like this, that quickly estimate the growth of Lipedema knowledge.
But we recently found ourselves asking a more complicated question: “How large is the Lipedema research workforce?”
Fortunately, with the Legato research library and other publicly available tools, we can count the number of authors associated with each study. We can even ask how often authors appear together on studies to get a rough sense of the level of collaboration in the research community.
To estimate the size of the Lipedema research workforce we looked at 89 publications that presented new data published over five years between January, 2017 and October, 2022. This number comes from a US government database of research literature (Pubmed), but we also compared this result to a similar analysis using Legato data and did not find any important differences. What we did find is that this roughly five-year period represents the work of 408 authors. While this number feels large, it includes members of the research team that you might hear less about. These might be students, or technicians who don’t always take the limelight in research but are critical to getting the work done.
So do we have 400 scientists in Lipedema? Absolutely. Are there 400 teams out there working on Lipedema? Probably not.
However, we can approximate the number of teams working on Lipedema by asking how often different scientists work together. We used a tool called a sociogram to visualize the data. In the image you see below, every circle is an author and the size of each circle is determined by the number of publications listing that person’s name as a contributor. Every line represents a time when two authors connected by the line worked on the same paper together.
Once this labyrinth of connections is drawn, we can begin to look at how connected specific groups of authors are to one another. The suggestion made here is that these 400 or so members of our Lipedema research community represent about 43 working groups, the largest of which is designated by the different colors.
So, as you see in the diagram, one estimation of the size of the Lipedema research community is that it comprises about 40 groups representing more than 400 individuals around the world.
By research standards, this is a small community to be sure. But this represents only a slice of time, and doesn’t convey the rapid growth of the field in recent years and the optimism that growth inspires. In terms of the Lipedema Foundation’s scientific strategy, this type of number is one we absolutely have to grow.
How do we attract new talent to Lipedema research? It may start with you! Raising awareness of Lipedema is key to identifying more patients, more scientists and more opportunities for research. Use LF’s resources including the blogs, Legato library, and complimentary brochure requests to make a difference for people with Lipedema. Join us on social media to talk about other ways to begin making Lipedema a household name in patient and medical communities.
CITATION
If citing this blog, please consider bibliographic data provided in the example below:
Eakin, G., & Lipedema Foundation. (2023). Estimating the size of the Lipedema research community. Lipedema Foundation Blog.lipedema.org/blog
NOTE
Source data acquired from Pubmed using “(((lipedema) AND (("2017/01/01"[Date - Publication] : "2022/10/01"[Date - Publication])))) NOT (Review[Publication Type])” as the search string. Manual review of the data was performed to ensure exclusion of case reports and secondary literature. Data was rendered with VOSviewer using Lin/Log modularity normalization. Repetition of the analysis using curated data maintained in a Zotero database (ie, the Lipedema Foundation LEGATO library). While this included some articles not indexed by PubMed this did not substantially change the analysis.