Treat Us Right: Comparing our Community to the General Population

Our recent series entitled Share and Compare focused on how patients like you can better answer the question, “How do I put my experience in context?” The answer, in part, comes from how much information you share to help create that context of real-world patient experiences.  Think of it this way – with every piece of information you share, you are contributing directly to research. When we’re conducting research, one of the things we look at is how similar or different you are to the populations at large.  We even have minimum criteria for a person’s data to be usable.  For example, if you indicate whether you’re male or female, you make it that much easier in determining how you “fit in.”  That one piece of information helps us know if our population is in fact representative of a disease, or whether we’re only getting one specific type of patient (e.g., males with fibromyalgia who don’t have much pain).  If we do get more of one type of patient, it becomes more difficult to draw any conclusions from that population and apply them to the general public. So, you may be wondering why we need to compare to the published literature/general public?  …

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