Noemie Elhadad, PhD
Giving patients the tools to contribute to endometriosis research
Patient Awareness Day
The Lifecycle of Endometriosis: From Diagnosis to Coping with Disease
Sunday April 17, 2016
Lenox Hill Hospital, Einhorn Auditorium
So, let me start with a question, how many of you have one these phones in your hands right now? A show of hands, a few of them. How many have them in their bag or not far from them? Many more. How many of you would be devastated if you left it at home in the morning? I know I would. I love my phone. As a matter of fact I am going to give my talk with my phone in my hands because I have my notes on here.
But I want to talk to you about phones and how they can help us advance research for endometriosis actually. I am sure you have noticed since all of you have some sort of smart phone in here that phones have been revolutionizing the way we act in society and the way we communicate with each other. We now take pictures of our food and various things. But patients and doctors and researchers have also noticed that it is starting to revolutionize health. We now have ways to track what happens with us, some of you might wear a Fitbit that tracks our steps. Very simple things, right? We can track, we can talk to our phone. The types of things we do with our phone are some of the most genuine and honest things we do. We tell our phones things we would not tell to our doctors or friends. All of these things can be learned.
Let me tell you a bit about my field of research. I am a biomedical informaticist which means I build the tools, I use technology to advance health and research. The phone right now is the thing that gets us all excited because it is one way that never happened before where we can follow a patient through time. W can learn what is happening with patients through time as much as they are willing to tell us through their phone. It is an instrument to collect data for research.
So where does this fit with endometriosis? Well, if I am a researcher, me or some of the researchers you have heard today or are about to hear later today and tomorrow there are many questions we have about endometriosis. We want to know what are the mechanisms of progression of the disease, we want to understand what is going to happen to women with endometriosis, are there subtypes of the disease? We know there are stages, we know that sometimes the stages do not correlate with pain and the way endometriosis manifests itself in women. How do we find these groups of people? We have instruments to collect data, right? And the Nurses Heath Study is an example that you have heard about today where data was collected through questionnaires every two years, sent to people. Our bodies change a lot in two years or seem to in terms of endometriosis change a lot, on a daily basis as a matter of fact. How can we build better instruments that can help researchers finds these signals?
On the patients’ side the patients also have a lot of questions. I am sure you know the questions. But some of them are, “Is this symptom new? Is this related to endometriosis at all? Is my quality of life changing? I can feel it is getting worse or it is getting better hopefully. But how is it? Can I remember what happened three months ago? How is it six months ago? Can I go to my doctor and in a very quick fashion show to my doctor everything that is happening with me right now?” My phone can help with this as well.
We at Columbia we are building a partnership with Endofound. We are building an app where we can learn some of these things from you guys, where we can collect this data from patients. Back in February we conducted a series of interviews and focus groups with patients and learned all sorts of things. I think as a matter of fact some of you are here it is great to see you again. We found that patients were all using actually some sort of tracking. Some were using it in their head, some were using their Google calendar and some were using their phones. There was a lot of frustration because there is not one place that contains all the information. There is also some frustration because it is not the right granularity. We just heard about pain during sex knowing exactly where this is happening. That is the kind of thing researchers want to know. I know it sounds funny to hear that researchers want to know and listen because it has been ten years maybe that you have been trying to be heard but it is true, we want to know of this.
The last thing we found from the focus group which got us really excited is that patients with endometriosis have this amazing altruistic need to contribute to research. They understand the role of research. They understand that funds are needed for research and they understand that the more data that is collected about the disease the better we can go to agencies that fund us and say, “Look we have a data set that we can learn from here”. This is what we are trying to build here. There are obviously a lot of partners involved; we are trying to work with computer scientists who can help us build these tools in a way that is engaging for patients, we are trying to work with epidemiologists who make sense of all the data, but the point is you guys, you guys are the ones giving us this data. The app we are building we can feed it back to you and help you make sense of your own data. Make sense of what is going on from you with you from one month to another, not only track yourself but visualize and make sense of yourself.
This data set again it is for you but it is for researchers and it is a way for us to go to the funding agencies, I am repeating myself because I am a teacher, but it is a way for us to go to agencies and really say, “Look, this is a story of women with endometriosis. This is the granularity and the depths of symptoms and the variety of symptoms of women with endometriosis”. We have just heard Jhumpta say that endometriosis is associated in people’s mind with pain. That is the only level of granularity or depth understood so far. When we talk to women with endometriosis trying to figure out what to track about them the range is amazing. We want others to know this.
Thanks to these types of tools, our phone, which is now in my pocket let me get it back – our phone. That is how we can get to communicate to researchers, to funding agencies and to the public in general what is going on with the disease and hopefully make sense of it and understand it better.
With that I will stop. Thank you.