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? Why can’t we just say that our conclusions apply to our users and leave it at that? The answer to this question has many parts:
- We have the ability to positively impact everyone with disease, not just our current members. Ideally, we will apply knowledge gained through research in our communities to all people living with diseases.
- From a research perspective, we have to know our biases, and how to correct for them if possible. For example, we tend to have more women than men in our populations. By knowing that, we can “correct” for it in our analyses by making sure our proportions are correct when we look at a sample of users.
- We can know how our discoveries fit in with other information known about a disease. For example, let’s say we figure out that patients who have had fibromyalgia for 15+ years improve their quality of life by doing Treatment X. If we don’t know how many patients have had fibromyalgia for 15 years or how many do Treatment X and don’t improve, the discovery loses some of its power from lack of context. Perhaps it isn’t a discovery at all! However, if we have data from our community to answer those questions and can compare it to published literature, we can trust more in our discoveries.
Here’s a great example of what can happen with the data you share. Recently, we evaluated our fibromyalgia community characteristics with the Demographics Survey sent out early in 2010. For some of our communities, the survey had fantastic results. We are now able to declare with confidence that our community very closely matches the fibromyalgia community at large (Table 1).
By maintaining your profiles and keeping accurate records of side effects, medications, background information, and outcomes (such as quality of life), you are participating in groundbreaking research that is already yielding fantastic results. Our research team has presented at prestigious conferences and written dozens of abstracts and papers. Working together, PatientsLikeMe has discovered new symptoms and compared treatment efficacy; we are also working towards creating an accurate picture of how medications work in the real world so you get the right treatment for you. This is just beginning.