Big Data – Big Hope!

by on April 17, 2013

Among the biggest challenges facing medical professionals when it comes to treating fibromyalgia and other chronic pain conditions is understanding how and why symptoms occur. Fibro is a shape shifter. It changes and moves around the body, often without any apparent cause or reason. Effective treatment varies from patient to patient. For medical professionals, trying to figure out what is going on and how to fix it is a massive confusing puzzle with many pieces missing!

Patients are difficult to fit into profiles that could help guide treatment efforts. Age, background, suspected triggering events, experiences, symptoms, length of illness, response to different treatments and co-morbid conditions vary to such a wild degree from patient to patient that utilizing knowledge gained from treating one patient to help another is extremely difficult.

Changing this is one of my goals.

big dataThe FibroTrack system is designed to aid patients in collecting real time symptom details, tracking treatment actions, causal factors, influencing life events and more. FibroTrack collects detailed patient profile information including family history, other diagnosed conditions, demographic details and additional relevant patient information.

While the FibroTrack system is designed to directly aid patients and their care providers in better understanding their individual fibromyalgia while facilitating the development of a proven effective multi-dimensional treatment approach, this is not the only goal.

I seek to make FibroTrack and the soon to be released care professional version of the system the biggest fibromyalgia focused research study ever conducted! *

Consider the possibilities:  Symptom information, treatment details, causal factors and more all tracked in a consistent manner including real time data collection for thousand of patients over an extended period of time.

What can we learn? What sort of symptom patterns can be deciphered? Can we identify links between symptom and demographic profiles and different treatment options?

Can we match patients to different chronic pain profiles in a manner that will enable the suggestion of likely effective treatment options? Can we jump start patients toward more effective healing by matching their profile to others and suggesting treatments that have proven effective for others who match?

Can we mine massive group data to prove which combinations of treatment options are most effective for different symptom profiles? Can we build a means of suggesting targeted treatments based upon a patients tracked data? Can we determine effective preemptive treatment approaches to interrupt the negative feedback loops that make fibromyalgia so frustrating?Research in Red

Can we use massive data to lead us to a cure?

All of this and more is what I seek to do. The database that we are building through FibroTrack and our care professional system will be made available to research professionals*. A huge database of consistent, accurate fibromyalgia patient information can provide new insight into how this condition functions and the most effective means of treating it. That is my goal! 

 

 * IMPORTANT  -  We NEVER share ANY personal identity or identifying information for FibroTrack members with ANY third party.  The information that will be shared with researchers includes only the details about the condition without anything like name, email, address or any other personal data of any kind attached. We take individual privacy very seriously. Only group data, excluding ALL personal identity information, will be shared with researchers.

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Alison Stephens April 17, 2013 at 4:23 pm

Think this is a great idea. A cure or at the very least the best way to manage symptoms etc can only be done be collecting data and information from people who actually suffer from Fibromyalgia. I am sure most of us , would be happy to help in any research or data collection, if it helps the understanding of this strange debilitating disorder, which is painful, and life changing and can possibly benefit all Fibromyalgia patients with it’s findings .

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Shivawn LaBarre April 17, 2013 at 4:55 pm

I would like to join in the research! Maybe nothing will happen in my generation, but I want to help the next generation avoid this painful syndrome!

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