Are you someone who likes to track things about yourself?  For example, do you keep an exercise log of how many reps you did – or a food journal that details what (and how much) you consumed?  Do you monitor your health and disease progression at PatientsLikeMe?

If so, you might not know it, but you are part of the growing Quantified Self (QS) movement.  Also known as “Body Data” and “Life Hacking,” the QS movement was started by Wired magazine editors Gary Wolf and Kevin Kelly in 2007.  The idea is to increase self knowledge through self tracking.  More specifically, QSers use technology to record data on various aspects of human life, from “inputs” (food, air) to “states” (moods, blood oxygen levels ) to “performance” (mental, physical).

The hub of the movement is http://quantifiedself.com/, an online community where QSers can share their methods and learn from what others are doing.  In addition, QSers get together face-to-face for regular Show&Tell meetings in various cities around the world as well as an annual conference, which takes place this September in Palo Alto, California.  According to the website, the conference is a “working meeting” for users and tool makers looking to collaborate on self-tracking projects and explore the potential effects of self-tracking on society.

For many QSers, such as astrophysicist-turned-computer scientist Larry Smarr, self-tracking conveys huge benefits.  According to this fascinating profile in The Atlantic entitled “The Measured Man,” Smarr sees it as a tool for battling obesity, defeating incurable diseases (in his case, Crohn’s disease) and revolutionizing healthcare.  He’s got a good reason, too:  this is a man who monitored his own blood work and detected an inflammatory state in his body long before his first Crohn’s symptom appeared.   While some people feel that with enough data every person could find something wrong with their health, Smarr argues that it’s far better to detect that something’s “beginning to go wrong” and seek “preventative maintenance,” just like you would with an automobile.

It’s a striking analogy.  Could we as human beings extend our lives – just as we extend the lives of our cars – through data tracking and “tune-ups”?  It’s one of the big questions at the heart of the QS movement.  But as far as we’re concerned here at PatientsLikeMe, self knowledge – as well as shared knowledge – is always a good thing.  That’s why we’ve developed tools to help you measure your disease progression (e.g. our Multiple Sclerosis Rating Scale), track how your treatments impact your quality of life, monitor over 200 lab results (e.g. Vitamin D, cholesterol, PSA levels) and record how you are feeling day-to-day (our InstantMe survey).  Better yet, we help you share that data with other patients like you, so that everyone benefits and learns.

What do you think?  Has “quantifying yourself” led to any breakthroughs for you?

The term “hat trick” originated in 1858 after English cricketer HH Stephenson successfully bowled out three batsmen with consecutive bowls and he was presented with a hat to commemorate his feat. In June, PatientsLikeMe’s research team scored a hat trick of our own by publishing three new studies in scientific journals in just four days, bringing our total number of published studies to 27.

As employees at a start-up company, we all wear many hats – literally, as you can see from the photos below, and figuratively, in terms of our responsibilities as scientists, product developers and business people across different disease areas. For instance, in this trio of papers, we address research issues in multiple sclerosis (MS), ALS and mood disorders. Click on the study titles below to read the full papers and a big thank you to all of our patients for sharing your voices and making this research possible.

Monday, June 18th – First PatientsLikeMe study published.

The multiple sclerosis rating scale, revised (MSRS-R): Development, refinement, and psychometric validation using an online community

Members of our MS community will be familiar with the MS Rating Scale (MSRS), which is their primary outcome measure. We developed it a few years ago to address an unmet need for a brief, easy-to-use rating tool that covered more areas than simply walking. In collaboration with a neurologist, we sketched out our first version of the MSRS, which has now been used over 90,000 times by our 28,000+ MS members to share your progress, track your relapses and disability, and gain insight into how your treatments are working.

Published in the Journal of Medical Internet Research, this new study describes work to improve the MSRS to a revised version (the MSRS-R) and establish that the instrument measures what it is supposed to measure (reliability), that it correlates well with other instruments (concurrent validity) and that it allows differences between groups of patients (sensitivity to change). This process of “validating” a patient-reported outcome (PRO) is an important step in increasing the value of the data that we produce for researchers. Studies are underway right now to continue improving the instrument and compare it to doctors’ ratings of patient disability.

As with all outcome measures we develop at PatientsLikeMe, we have licensed the MSRS-R for anyone to use freely in their own research studies. This work also serves as a foundation for our resident predictive modeler and particle physicist Dr. Tim Vaughan to begin work on predicting the course of an individual patient’s disease using your MSRS scores!

Tuesday, June 19th – Second PatientsLikeMe study published.

E-mental health: A medium reaches maturity

The Internet has transformed many aspects of healthcare in the past decade, and to open a special issue on “E-Mental Health” in the Journal of Mental Health, our R&D Director Dr. Paul Wicks was commissioned to write a special editorial.

Available by clicking the link above, the paper describes the progress of online systems for people with mental health issues, from government-provided resources (such as this UK NHS Choices site about self-harm) to commercial, computerized cognitive-behavioral therapy programs like “Beating the Blues” and collaborations between different sectors of the health system. For instance, in the UK if you Google “suicide” there is a special message from the Samaritans mental health support service right at the top of the page.

At PatientsLikeMe, our vibrant mood community has been active since 2008, and our published research has shown that it provides improved outcomes to many of our members.

Thursday, June 21st – Third PatientsLikeMe study published.  Hat trick completed.

Mining Online Social Network Data for Biomedical Research: A Comparison of Clinicians’ and Patients’ Perceptions About Amyotrophic Lateral Sclerosis Treatments

As you probably know, the story of PatientsLikeMe starts with ALS and trying to find treatments that can improve the symptoms, including anxiety, stiffness, or constipation. Back in 2003, ALS nurse Dallas Forshew and Dr. Mark Bromberg published a small study describing massive variation in the way ALS doctors from 39 specialist centers treat the symptoms of ALS. This data was also described in our 2010 TEDx Berkshires talk about the value of crowd-sourced data.

In this new study published in the Journal of Medical Internet Research, we collaborated with researchers at the University of Utah to compare the passively collected ALS patient data from our system with what the clinicians said. Although they agreed in most areas, there were split opinions too, particularly when it came to the perceived level of efficacy that these treatments had. Click the link above to read more.

This paper is also notable for being our own Shivani Bhargava’s very first scientific publication! Shivani started with us as an intern, then became a research assistant, and has recently made a career change to start studying as a software engineer. A true renaissance woman!

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features employees from different departments.  So far, we’ve interviewed User Experience Engineer Cris Necochea, Research Assistant Shivani Bhargava and Office Manager Alison Dutton.  Today we hear from Research Scientist Timothy Vaughan, who earned his PhD in physics before deciding to focus his simulation and modeling skills on medical questions.

1.  What research projects are you working on at the moment?

I am working on a few different things. My primary focus recently has been on modeling multiple sclerosis (MS). As just about anyone with the disease can tell you, MS is a highly complex, highly variable illness. To even get a good description of the experience of a patient is a challenge. As one of the “mathy” people at PatientsLikeMe, my job is to try to make the description as systematic and quantitative as possible, because mathematical relationships are often the best tools in trying to solve the underlying puzzle of what the body is doing.

So, for example, I have recently been looking at some of the ways that symptoms and the Multiple Sclerosis Rating Scale (MSRS) are interrelated, which may help us understand how functioning and symptoms go together. And, although I am focusing on MS, I am constantly struck by how certain concepts seem to apply across conditions, so I am hopeful that we can learn things that will ultimately help all our patients.

2.  Tell us how computer simulation and modeling help you do your job.

It is fair to say that my job would not even exist without computer simulation and modeling! Partly because clinical trials and other scientific methodologies have become so expensive and time-consuming, scientists in healthcare have to really become creative in trying to learn more about patients and their conditions. Simulations and modeling are becoming essential tools in the era of “big data” that PatientsLikeMe is at the forefront of.

3.  What do you see ahead in terms of PatientsLikeMe’s research potential?

I have to quote the Danish physicist Niels Bohr: “Prediction is very difficult, especially about the future.” I think almost everyone in healthcare right now believes that patient-reported outcomes are going to be of greater and greater influence in the future…but no one is 100% certain how!

In many ways, research is forced to be in a somewhat opportunistic position, because one is never quite sure where the most promising frontiers are, where one is most likely to discover something interesting and useful for patients. But our research potential really stems from our patients. Their willingness to share how they are doing, in so many ways, gives us potential to not just work on what appears to be interesting now, but to quickly respond to new directions that might arise in the future.

4.  What are the three best things about working at PatientsLikeMe?

For me personally, the best thing about PatientsLikeMe is that every morning I wake up knowing that everything I work on is not just scientifically “interesting” (although I like that!), but also really has the potential to help patients’ lives. So, even though the work can be frustrating at times, it is always worthwhile.

The second awesome thing, and it’s almost a cliché to say around is here, is that the people here are so passionate and smart and great to work (and play!) with. Seeing other people working hard and caring deeply about what they do is a great motivation.  The third awesome thing: Alison makes sure there is a constant supply of York Peppermint Patties in the kitchen.

When patients join our site, a common question we get is, “Now that I’ve signed up, what can I do here?” One answer is that you can chart the real-world course of your disease and compare it against other patients. But that sounds a little complex, doesn’t it?

If we break it down into simpler terms, we are really talking about you sharing your health outcomes with each other, finding other patients like you and learning from the information that you have all shared. That’s why “Share, Find and Learn” is part of our core message at PatientsLikeMe, as it best explains how you can help each other with the in’s and out’s of your condition.

To give you a better understanding of what we mean, we recently asked a few patients like you for examples of how you’ve used PatientsLikeMe to “Share, Find and Learn.”

PATIENT 1 (MS)

SHARE: “I’ve shared as much information [as possible] about the medications I’ve taken and still take and the CCSVI procedure that I recently went through. ”

FIND: “It’s helped tremendously when there are others that have undergone the same treatment or procedure in that we can share updates or milestones.”

LEARN: “We are all in the same boat. I’ve learned a lot about diets, vitamins and exercise, but most of all, I’ve learned to always keep the faith and never give up on hope.”

PATIENT 2 (MS, asthma)

SHARE:  “On the graph of the Multiple Sclerosis Rating Scale with time [which monitors the progression of MS], you have added reference percentiles to let folks know how they are doing relative to the rest of the population.”

FIND: “I just searched for females between 30 and 65 with three stars and could easily see who was doing better than average and who was doing worse than average.”

LEARN: “If someone is trying to decide about ‘medication versus no medication,’ they can fairly easily spend some time comparing how those who take medication are doing versus those who do not and make a decision for themselves.”

PATIENT 3 (fibromyalgia, Lyme disease, peripheral neuropathy, Babesiosis)

SHARE: “It is fascinating…how what one person learned about their condition, how to deal with it and what is normal, etc., can be communicated to everyone via this website.”

FIND: “I would like to do a search based on other members who also have chronic Lyme disease.” (Note: This is now possible, thanks to the recent upgrade. Use the search filters on the Patients page to find the nine members currently reporting Lyme disease.)

LEARN: “I actually have relieved one of my symptoms, in part due to PatientsLikeMe- and have found validation for this new treatment through PatientsLikeMe that I hadn’t seen otherwise. I’ve been a member since November, so that is amazing success in a short time.”

Thanks to all three members for sharing their thoughts and experiences. Why not see what you can “Share, Find and Learn” today?