Patients and Data Science: What is ‘Citizen Endo’ ?
Citizen Endo is a project created by women with endometriosis, who happen to be data scientists and health researchers at Columbia University in New York.
We care about endometriosis research because we have suffered from this disease for years, along with one in every ten women across the globe. We are frustrated as patients, and unsatisfied as professionals by the slow progress toward a cure for the disease. So we’ve decided to do something about it.
What’s the Problem?
The way we see it, in order to study a disease, we need to know what it looks like. When it comes to endometriosis, there are many different ways in which the disease can manifest beyond the stereotypical painful periods and infertility. There is a disconnect between what doctors recognize as endometriosis symptoms and what patients are actually experiencing day to day. Bridging this gap is critical to further research on endometriosis.
“Citizen Endo will use a series of studies to bridge the gap between patient experience and the current medical characterization of endometriosis”
So how do we fix this? We need to phenotype endometriosis.
A phenotype simply means a set of observable characteristics. In endometriosis, this can be the symptoms that we experience as patients such as endo belly, shooting leg pain, or exhaustion; biomarkers for the disease; or histology from tissue samples (like what you see on a pathology report after a laparoscopy).
Phenotyping endometriosis will allow us to identify different types of endometriosis. Researchers have already found that there is more than one phenotype of endometriosis by looking at histological samples from excised lesions. But, we don’t know how many different phenotypes there are in endometriosis, nor what each one looks like when we take all the symptoms of endometriosis into account.
Having this information will allow for precise treatment and and prognosis of the different ways that endometriosis can affect women. Identifying these phenotypic subgroups will help us answer questions like why some women respond well to some treatments, why some are infertile, and why some see no relief in their symptoms after menopause.
That’s great. How will Citizen Endo help?
We are health data scientists. We make tools (like apps) to collect data together with patients, clinicians, and researchers, explore it, make sense of it, and ultimately find the signal hiding in the noise. We want to collect data from a whole lot of endometriosis patients and use this data to phenotype endometriosis. Because this is a research endeavor first and foremost, patient data is always kept private and secure. Each patient matters. Patient by patient, we are building a complete picture of endometriosis in the search of solutions and a cure.
Patients like us already regularly use some method of tracking their symptoms. But none of these methods are specifically designed for endometriosis. Whether on old-fashioned pen and paper, through a notes app, or a period tracking app, none of these methods deals with all the symptoms of this systemic and chronic disease. And, of course, none of that data makes it to researchers and doctors. This is where Citizen Endo comes in.
Citizen Endo will use a series of studies to help patients better understand how endometriosis affects them. It will allow them to contribute to phenotyping the disease so other patients don’t have to suffer in the future.
Patients: we need your help to make this project a success. Success means getting a comprehensive picture of the disease from and together with patients. It also means that with each piece of information you track, you can make sense of your own experience of endometriosis and how to manage the disease.
Look out for our upcoming posts on:
Why isn’t there enough funding of endometriosis research in the US?
How the ‘Quantified Self’ movement could help endometriosis research
What does privacy mean when it comes to health apps?
While you are waiting for our next post, read about the enormous value of patients’ insight into their own experiences.