6 posts from November, 2010

“To Measure Is To Know”

Posted November 23rd, 2010 by

Always check primary sources….

This was the title of a brief message sent to me from Paul Wicks, our head of research here at PatientsLikeMe.  He was referring to a quote I have used as my email signature for the last few years; he had discovered I had wrongly attributed it to Archimedes.

“To measure is to know” is the quote in question.  I originally sourced it when searching on Google for quotes on measurement, which is one of my passions.  I believe I found it on this website where it is listed among a number of business quips.measureknowimage

The irony is not lost on me that the Internet fooled one of the founders of a company that sells scientific data collected on the Internet into using a false reference.

I suppose it is possible that Archimedes, as one of the founders of modern science, believed in the value of measurement and might have said some Greek variation of the phrase.  Unfortunately for me though, a reasonably extensive search does not indicate there is any evidence he actually uttered those words or anything like them.  “To measure is to know” perhaps most appropriately belongs to Lord Kelvin and a search on Google yields 12,000 hits for this linkage.  When I look deeper though and search for primary sources, I am not confident that that I can find a citation to a time he used wrote or said those exact words (note to the crowd: send me a reference if you have one).  The phrase is clearly a more concise version of this quote which appeared in Electrical Units of Measurement, Vol 1, 1883-05-03.

“When you can measure what you are speaking about,
and express it in numbers, you know something about it”
– Lord Kelvin

One of my first rules of research is if you screw up, then admit it loudly and learn from it.  So I admit my error loudly and I sincerely apologize to those that have referenced my use of the quote.

I think there are several lessons here for all of us as we embark on this journey of using the Internet to do medical research.

  1. Many hits do not make something true.
  2. Interpretation errors can come in many forms.

It turns out you can fool most of the people sometimes and this is true in literary references and in the kind of data we collect at PatientsLikeMe.  This calls on us to be extremely rigorous in checking the primary sources we use. By using all the tools at our disposal, we must verify that we are not being fooled by errors of bias, noise or wishful thinking.  It also demands that we are precise in our assertions of the meaning of our data, so that it describes what we know and not what we might believe.

I learned a long time ago that reading a news story or even an abstract about a research paper is a very different experience than reading the actual paper itself.  While one often finds something interesting, funny, or quotable in the news or the abstract, the paper rarely contains the assertion when it is carefully examined and the limitations of the data and its sources are known.

Sadly my false attribution to Archimedes on Twitter, email and in PowerPoint slides has become a new source of validation for the quote.  If you do a Google search of  “To measure is to know, Archimedes,” you’ll now find links to my sources and those of several of my friends who mistakenly trusted me to be reliable.  It will be hard to correct these and it is likely someday someone else will use this misquote and inappropriately cite me as a source.  To those people, I again apologize and hope this correction rises to the top of the Google search.

It can be dangerously self-reinforcing to make assertions in the age of the Internet with its replication and failure to generally reference correctly.  This means that those of us who value truth should make those assertions very, very carefully.

So I am updating my signature for a while a new quote and a link to this essay.

“Always check primary sources”
– Paul Wicks, Ph.D.

P.S. – I am fairly comfortable contributing that quote to Paul.  Though it is to some degree a common sense concept I think Paul’s use and context are original enough that an attribution is justified.  A Google search reveals that that exact wording is only found 443 times (as of Nov 17 2010).  The top 30 or so were mostly in long form text and not really in quote style.

PatientsLikeMe member jamie

Epilepsy Awareness Month: The Alternative Way

Posted November 16th, 2010 by

It’s Epilepsy Awareness Month, so let’s continue with our series of blogs about our Epilepsy Community members’ experiences with this disease. Below is an interview with member “akamine2525.”  Earlier this year, she gave the following interview in our monthly newsletter. Want to know what keeps akamine2525 motivated, who she admires and how epilepsy has affected her work life?  Read and share on.

* * *

2166 (Amy) What keeps you motivated?
user_77714-full-original (akamine2525) Throughout the years I have been on many different medications for seizures. I’ve had pretty much all different type of seizures from grand mal to absence seizures. I have had psychogenic seizures due to previous abuse and bipolar disorder due to previous abuse. My doctors at Straub Hospital in Honolulu are the ones I trust the most with my recovery. My current physician, Dr. James Pearce, just recently started me on Keppra, which by far has helped me the most with all of my seizures and my bipolar disorder.
2166 (Amy) Who do you admire and why?
user_77714-full-original (akamine2525) I admire all of the people who try to learn how to control their seizures with alternative ways such as diet, exercise, supplements, herbs, and religious activities if they are religious also helps a lot. It says a lot to me if a person tries to find control of their seizures because it says I really want to make life as easy as possible, not letting limitations get in my way.
2166 (Amy) How has your condition affected your work life?
user_77714-full-original (akamine2525) For a while, seizures and bipolar disorder had a lot to do with work. Because my seizures were so out of control several years ago, it limited the amount that I worked, but when I was able to work, I did more than I could beyond my limits. Today, I don’t work, and I care for my dog, but if I had the opportunity to work again I would consider it.
2166 (Amy) What’s your favorite part of PatientsLikeMe?
user_77714-full-original (akamine2525) My favorite part of PatientsLikeMe is I get to hear from other people who have the same conditions as me and also try to help them to get better with alternative ways besides prescription medication. My goal is to help others to limit their prescription medications if possible and to deal with seizures in other ways.
2166 (Amy) Thanks so much for sharing, akamine2525!

PatientsLikeMe at Health 2.0: Paths to Insight

Posted November 15th, 2010 by

Last month, I spoke once again at the Health 2.0 conference in San Francisco.  The video of my presentation is now online.  Here’s a snapshot of what I covered in the 6-minute talk:

  • The wealth of data shared in a PatientsLikeMe treatment reports (e.g., what fibromyalgia patients are sharing about Cymbalta and Lyrica)
  • A suite analytical tools we have to drill down on this underlying data, such as
    • PatientsLikeMeLandscapeTM – a tool to learn more from what patients like you are talking about in the forum.
    • PatientsLikeMeListenTM – a sentiment analysis of keywords in those forum conversations
    • PatientsLikeMeInsightsTM – our query engine that dives deeper into the data (e.g., weight gain in Cymbalta/Lyrica patients)

As I note in my presentation, there are a lot of caveats to what I have up on the screen.  We as an organization believe in being careful about throwing terms around like “evidence.”  So what you see in this video is not evidence – it’s the first look at some of the data we have to work with and what we can do with it as we continue on our path to create evidence.  With no uncertain terms, though, what you see here is the beginning of the insight we can generate around clinical outcomes of patients and the real-world impact of treatments.

PatientsLikeMe member bheywood

Epilepsy Awareness Month: What do you know about Epilepsy?

Posted November 11th, 2010 by

epilepsyLaunched earlier this year, the PatientsLikeMe Epilepsy community now has more than 3,000 patients.  In honor of Epilepsy Awareness Month, here’s a snapshot of what patients like you are sharing and learning about in this community.

Did you know…

  • You can search for patients by more than 10 seizure types, such as simple partial, myoclonic, atonic, and tonic-clonic.
  • You can also search by 19 different epilepsy types, including temporal lobe, frontal lobe, occipital lobe, juvenile myoclonic, Lennox-Gastaut syndrome, and epilepsy with grand mal seizures on awakening.
  • Others in the community have indicated a causative comorbidity for their condition, such as:
    • Head injury (242 patients to date)
    • Brain tumor (70 patients to date)
    • Stroke (38 patients to date)
    • Encephalitis (34 patients to date)
  • 543 patient members were diagnosed recently (5 years or less) and 823 were diagnosed 20+ years ago.
  • Nearly 500 patients have completed the first in a series of surveys that measure their mental, physical and social well-being. (See “Manage your epilepsy like a PRO”)
    • As part of this first survey, members told us the top issues most important to them – indicating the top three as overall quality of life, seizure worry (i.e., impact of seizures) and mental activity (i.e., thinking, concentrating, memory).

How are our members treating their condition?

What are their major symptoms?

  • The 5 most common symptoms reported include: Memory problems, problems concentrating, fatigue, excessive daytime sleepiness (somnolence) and depressed mood.

What are they talking about?

  • Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Keppra, Lamictal, Vimpat and Topamax), as well as seizures, seizure triggers, driving, and doctors.
  • Members share a lot about their experiences switching medications and managing side effects.
  • Members motivate each other to make the most out of their doctor visits by encouraging you to ask certain questions and be proactive in seeking care.

What else do you know?  Learn and share with PatientsLikeMe today.

Epilepsy Awareness Month: The Beauty and The Turbulence

Posted November 5th, 2010 by

Did you know November is Epilepsy Awareness Month? In honor of the month and to help raise awareness of epilepsy, here is the first in a series of blogs about our Epilepsy Community members’ experiences with this disease. To kick us off, let’s meet tonialpha, a three-star member and PRO who recently sat down with us to give the following interview in our monthly newsletter. Read on to hear more about how tonialpha maintains perspective, passes the time and learns from PatientsLikeMe.

* * *

2166 (Amy) What are you most proud of?

(tonialpha) I am most proud of life. Life is environment. It is inside and out! We see the beauty and the turbulence. It is how we see it and take it.

2166 (Amy) How do you maintain perspective?
tonialpha_epil-original (tonialpha) I need to review, review, review, review! My perspective of things sometimes leaves me due to stress, letting things overbear my thoughts and mutter my mind. I need to step back, take a walk or go in the bathroom and read, call a friend, text a friend or look in the dictionary when I am confused. Taking a walk outside helps me, when I am alone and can rationalize.
2166 (Amy) What is your favorite hobby or pastime?
tonialpha_epil-original (tonialpha) Walking and reading.
2166 (Amy) Tell us the most important thing you’ve learned at PatientsLikeMe.
tonialpha_epil-original (tonialpha) I noted stress caused seizure increase, and with less stress, my seizures decreased. My clusters seemed to have relinquished. Also, I have been able to speak to my epileptologist about the frequency easier.
2166 (Amy) Thanks so much for sharing, tonialpha!

The Patient Voice | Episode 5: A Little Elbow Grease and a “Can Do” Attitude

Posted November 2nd, 2010 by

I don’t think about what I can’t do,
I think about what I can do.  – Cher441


Over the past month, we’ve heard several stories about how PatientsLikeMe Parkinson’s Disease community members came together online and made a quilt that has traveled all around the world providing warmth, comfort and a sense of unity for each of its recipients. So where is the quilt now and what is it being used for?

I recently sat down with member Cher441, who currently has the quilt. An advocate for raising awareness about Parkinson’s, Cher441 is involved with many support groups including, The Courageous Steps Group, The Parkinson’s Disease Bootcamp group, The Ohio Parkinson Foundation Northeast Region group, as well as several other local awareness groups near her.  Recently, The Courageous Steps and Parkinson’s Disease Bootcamp groups hosted events where Cher441 brought the quilt for everyone to see.

Being a member of so many groups didn’t come easy to Cher441 in the beginning and she credits the connections she has made through PatientsLikeMe as the kick-start for her involvement in everything else.  Listen in to my conversation with Cher441 about how she has been using the quilt to raise awareness about Parkinson’s Disease.

As this podcast series about the PatientsLikeMe Parkinson’s quilt comes to an end, there’s no doubt that the story goes on.  Thank you to all of my guests who have contributed to this first series, including PokieToo, Browncat, VigWig, Aunti J and Cher441.  You’ve warmed and inspired us all with your pieces of this quilt.

Stay tuned for more of The Patient Voice in the coming weeks.

PatientsLikeMe member afleishman