10 posts in the category “Share and Compare”

Someone Like Me

Posted May 25th, 2012 by

We are pleased to present a guest post by PatientsLikeMe member Jasmine (Jazz1982), who was diagnosed with multiple sclerosis (MS) in her mid-twenties.  Don’t miss this beautiful essay about the commonalities between all patients who have lost functionality – regardless of how different their conditions might seem.

I recently met someone that happened to be just like me but not in the way that I expected. I’m currently doing my master’s thesis and was interviewing an occupational therapist who had had a stroke herself. Her name is Lena, she’s 55 years old and not only has she had one stroke, but four of them. You might think this had made her “disabled,” but as with a lot of people I meet that have a chronic illness, it has only enabled her even further and made her more determined. The interview was supposed to last a maximum of 30 minutes but lasted three hours. We just couldn’t stop talking.

MS Patient and Guest Author Jasmine (Jazz1982)

At this point I think I should introduce myself. My name is Jasmine, I’m 29 years old and I have multiple sclerosis (MS). To a layman’s ears, this would mean that on a random basis I lose one or more functionalities, and with medication, I might gain one or more functions back or maybe not. I’ve been one of the lucky ones, and I’ve gained almost all functionality back. A big thank you to my neurologist and rehabilitation team for helping me reach this point, and it’s a very happy point.

I’ve always been on the look out for someone just like me, give or take a few symptoms, only I was never been able to find that certain someone. That is, until Lena. I can’t say for sure how it all started but we started asking about each others’ symptoms, and I found out that she was on an MS drug for fatigue. This at first took me by surprise, an MS drug used for people who’ve had a stroke? What is this black magic that she speaks of? She went onto say that it has worked wonders for her and has made it possible for her to continue working. Then it hit me like a meteor:  we might have different labels that cause our symptoms, but what difference does it make if I’m fatigued or she is? It’s all listed under the category of fatigue, and if the medicine works for me, why not for her?

The more we shared, the more fascinating the other became. We first started off with similar symptoms and then diverged into our more “unique” ones and between the both of us there were a couple of doozies! I’ll give one of mine as an example – a time came where I could not recognize faces and explaining that to people was an impossible task as they could not relate to it so I simply avoided people altogether. She has never been through it, but the basic understanding of losing a functionality that is invisible to everyone else but you is a loss that once experienced makes it familiar. Basically, monkey suffers, monkey feels.

The repercussions of this had a larger than life effect on me and saved me many a session on the therapist’s couch. Amazingly, through the exchange of our uniquely individual symptoms that were incomprehensible to the rest of the world, and after years of feeling like an outsider, I suddenly felt “normal.” Imagine that, me normal!

I’ve always been the outsider, and now I suddenly felt like I wasn’t alone.

We have this idea that only someone that has the same disease knows what we’re going through, and I can not find that to be true anymore. I believe that we are on this Earth to connect with one another, despite age, color, race or disease. Being sick is merely another factor added to the matrix of connecting with others. We’re all people bringing our unique mix of genes, environment and strategies to the table of life. It sounds like it makes things more complicated, but to me, it has widened my net and simplified things. I don’t need to categorize and filter people and go through a checklist. All of that melts away into one question: “Does he/she get it?'” Simple, tried and tested on many a person, and I would highly recommend you try it as well.

So, the take-home message would be: talk to others. They don’t have to have the same disease to know what you’re going through, they just need the basics and the understanding. And I know that everyone out there can find someone out there that is just like you. Happy hunting!

These words are dedicated to Lena, thank you!

A big thanks to Jasmine for sharing her poignant revelation with all of us.  Stay tuned for more guest posts by our amazing patients!


Canine Caretakers: How Service Dogs Can Help Many Types of Patients

Posted May 17th, 2011 by

Service Dog Mali

Now that PatientsLikeMe is open to any patient with any condition, we’ve noticed more patients with different conditions sharing similar lifestyle modifications. One example is the use of a service dog.

What are the benefits – both expected and unexpected – of a four-legged assistant?  We asked some of our members to talk about their service dogs’ best qualities.

The Uncanny Seizure Predictor

  • “[My seizure dog Mandy] has awakened me two times just as a seizure was about to start. I don’t know how she does it but she does. In fact, I had a seizure outside once (doesn’t happen often), and Mandy ran to a neighbor’s house and barked until they came to me.” Mandysmother (Epilepsy patient)

The Sensitive Tear Licker

  • “He is my balance dog. He knows when I am about to have a migraine or a seizure and he even knows when I am hurting. Isn’t that funny? He licks my tears when I am crying, and he knows when to stay away from me.”  Some1Special (Mental Health and Behavior patient)

The Good-Humored Mind Reader

  • “[My service dog Mali] was the best decision I ever made. With her I now have some of my independence again, and for a woman who used to climb mountains and water ski, going to the store again after years never going anywhere alone, this means the world to me. The fact that Mali has a sense of humor and seems to read my mind is only another blessing to go along with my newfound freedom.” Anahit (Fibromyalgia patient)

The Anti-Tripping Companion

  • “My neurologist thinks the service dog is preventing my gait from freezing! (When he heels, he constantly moves his head near my knee to check for a command.) I haven’t ended up on the ground or floor since I got him. He is great company! He is always willing to join me on my ‘5 miles/day,’ and since I got him, no one has mistaken my Parkinson’s for being intoxicated!”
    FriendlyTraveler (Parkinson’s disease patient)

Do you have an outstanding service dog too?  Share your experiences in the comments section and don’t forget to add “service dog” to your list of lifestyle modifications.

PatientsLikeMe member jdevita


Share and Compare: What Have You Learned with InstantMe?

Posted March 9th, 2011 by

How are you feeling today – honestly?

instantme-choices

In December, PatientsLikeMe launched a new feature called InstantMe. It’s designed to allow you to chart how you are feeling day in and day out. Is today a bad day? Record it on InstantMe (found on your profile), and if you’d like, add a note explaining what’s going on.

With InstantMe, patients like you are able to learn about your day-to-day fluctuations in response to your symptoms, treatments and many other things, such as family stress or work issues. More than 13,000 of you have been using InstantMe for a little over three months.

So, what have you gleaned from it so far? Here’s a sampling of the feedback you’ve shared.

  • I really like Instant Me because I see that I am feeling better than I thought and noticed the weather really has an effect on me.
  • I’m more aware of the changes that have occurred since I had the CCSVI procedure. And using this new InstantMe has let me chart this almost on a daily basis.
  • I can record when and why I feel the way I do, like if I am trying a new supplement and such, or forgot to take my vitamins, or if my teen was home all week.
  • My neuro asked that I keep a diary of my issues and when PatientsLikeMe started InstantMe, that was a perfect format. This allowed me to track day to day changes in pain levels and V/S steroid input.
  • One thing I have noticed is that that feeling of being more run down at the end of the week is NOT my imagination. I also am curious to see what times of day are my “best” times to do mental activities.

What about you? We’d love to hear what you’ve learned from answering the question “How are you feeling?” on a regular basis.

PatientsLikeMe member emorgan


Rare Disease Day 2011: “Rare, But Equal”

Posted February 28th, 2011 by

RDD_whiteFor patients with prevalent diseases, it may be easy to find others with your condition.  You meet them at clinics; you run into them when seeing your specialist; or you participate in one of the support groups in your area.  For those with rare diseases, the simple act of finding another patient like you isn’t always as easy.  You might be the only patient your doctor has seen with your condition.  Finding another patient often becomes a goal and sharing and learning from them a welcomed reward.

Alongside NORD and EURORDIS, we are celebrating Rare Disease Day and they’ve deemed this year’s theme “Rare, but Equal.”  At PatientsLikeMe, patients are patients, no matter what their condition.  Patients with rare diseases are sharing their health information alongside patients with more widespread conditions.

So, who do we have sharing information about their rare disease?  To date, more than 455 patients with Multiple System Atrophy and 122 patients with Progressive Supranuclear Palsy, both neurodegenerative disorders that mimic Parkinson’s disease, have joined our community.  Do you have Neuromyelitis Optica, the autoimmune inflammatory disorder affecting the spinal cord, optic nerve, that has lesions often misdiagnosed as multiple sclerosis?  There are 332 patients just like you.  Sharing right alongside these patients you’ll find 388 patients with Progressive Muscular Atrophy (a rare subtype of ALS which only affects the lower motor neurons) and 331 with Primary Lateral Sclerosis (a subtype of ALS which affects the upper motor neurons).

Many of you also know that we actually started PatientsLikeMe focused on the rare neurodegenerative disease, ALS.  Six years later, there are now more than 4,000 ALS patients-plus almost 20% of the newly diagnosed in the U.S. every month-sharing their journeys and learning from one another.  (You can read about highlighted milestones in our 2010 ALS Awareness Month blog.)  In 2011, we’ll continue our heritage of serving those with rare diseases by improving this overall experience of finding a “patient like me.”

There are no major awareness raising pink ribbons or yellow wristbands for these rare diseases.  But, there is a group of patients who have found each other, who are sharing with one another and the world their disease experience.  And, that will translate to accelerated research and better outcomes – two things we are hoping to make a little less rare.

PatientsLikeMe member mcotter


Share and Compare: The Launch of Two Medications

Posted February 10th, 2011 by

The launch of a new medication can be a very exciting event.  It can renew hope for a better future and provide proof of the billions spent on research every year.  It can also stimulate a lot of interesting conversation.

Or not.  We’ve learned from you that not every new medication warrants your attention and discussion.  What’s fascinating is learning which ones do and which ones don’t, and why.  We saw a recent example of this on PatientsLikeMe:

medsavb

(In this chart, the medications are called “A” and “B” so, as we continue to observe and research dialogue about these medications, we will not have influenced you in any way.)

This chart shows the volume of conversation about two new medications that were approved by the FDA to treat the same disease.  We studied the time immediately following FDA approval of each new medication to see whether or not patients were talking about them.  Since the drugs were approved at different points in time, we simply shifted them onto a single timeline for head-to-head comparison.

What a difference!  In the first month following FDA approval, you discussed Drug A 67 times but Drug B only 25 times.  Three months later, the difference grew to 402 discussions about Drug A to only 42 discussions about Drug B.

What caused this difference, and why is it so pronounced?  Let’s get the obvious stuff out of the way:

  • There was no major event or change on PatientsLikeMe during this time.
  • The number of patients on PatientsLikeMe was approximately the same when both new medications were approved.
  • PatientsLikeMe was not influencing conversation on either new medication.
  • Neither medication was available for use before month 3, long after the two lines in the chart had separated.
  • Similarly, the companies that developed these new medications did not begin their marketing efforts before month 3.

What this leaves is the new medications themselves.  There must be something different between Drug A and Drug B – could be side effects, could be efficacy, could be something else entirely – that drove the volume of conversation about Drug A only.  PatientsLikeMe will study this in greater detail to understand and illuminate the factors behind this phenomenon.

Why?  Because researchers need to know what you value in new medications.  By listening to your unmet needs, researchers can develop solutions to unsolved problems caused by your disease.  Wouldn’t that get you talking?

This is just another example among many of how you are selflessly giving back and helping advance medicine on PatientsLikeMe.

PatientsLikeMe member cfidyk


The Patient Rules. A Discussion with the PatientsLikeMe Executives

Posted December 13th, 2010 by

We recently sat down with our executive team here at PatientsLikeMe in our first-ever roundtable-format podcast.  In this PatientsLikeMeOnCallTM interview, we ask Co-founders Ben and Jamie Heywood, Chief Marketing Officer David S. Williams III, and R&D Director Paul Wicks PhD to discuss why our recent series themes are so important to the history and future of PatientsLikeMe.

Blog Series Themes:

  1. “Share and Compare” – where you learned more about how and why patients like you are sharing their health information to put their experiences in context.
  2. “One for All” – including visualizations on how one member of a community can be the catalyst for a universe of unparalleled dialogue and support.

While discussing how patients can continue to drive the health care process, they also help us preview this week’s discussion called “Treat Us Right.”

Treat Us Right screen-shot-2010-12-13-at-125537-pm
In this series, we focus on how you can see if your treatment is right, just by the information shared by patients like you; and how important your shared information is to research efforts – both for academia and industry to learn how they can help each of you make good choices about your treatments.  We’ve heard you tell industry to “Treat Us Right” and we will talk more about it this week.

We kick off “Treat Us Right” week tomorrow with Research Scientist Catherine Brownstein, MPH, PhD describing why it’s critical to compare the PatientsLikeMe communities with the general population of the diseases to begin to assess the validity of treatment outcomes reported on the site.  Stay tuned.

Want to follow our blog?  Check out the sidebar to the right to sign up for a RSS Feed, email reminders or to follow us on Twitter and Facebook.  (And don’t forget to “Share This” any time you see content you like).


Share and Compare: Be a PRO! Understand Your Experiences in Context

Posted December 6th, 2010 by

This week on our blog, we’ve been highlighting how patients like you are putting their experiences in context.  With the launch of InstantMe and some of the design updates you read about, you can see we’re listening to your call for more functionality that lets you understand how your condition affects the whole you.

Patient Reported Outcomes (PRO) questionnaires are a great tool to illuminate the physical, mental, and social dimensions of your overall health. In fact, PROs are increasingly used in clinical trials, and in December 2009 the FDA approved the use of PROs to support product claims. Best of all, PROs are free of clinical interpretation, which empowers you, the patient, to have your voice heard in the real world.

PatientsLikeMe is an unparalleled platform for electronic PROs, which have a few advantages over traditional pen-and-paper ones, such as:

  • Patients are more likely to share and share truthfully using electronic interfaces;
  • Researchers have real-time access to the data;
  • Electronic PROs enable alerts for specific concerns (such as adverse side effects), ensuring better safety for all patients (1).

Early on in our partnership, our colleagues at the biopharmaceutical company UCB proposed a longitudinal PRO survey: members of our Epilepsy Community would have access to surveys that reveal the effect of their condition on everyday life over distinct periods. That’s right — you could see your progress over time! Together with UCB,  we decided to take the concept of an electronic PRO one step further: not only would you be able better understand your own experience with epilepsy, but you would also be able to put it in context. When you complete a PRO survey, you’ll see that you can compare your results to the larger Epilepsy Community!

Figure 1

qol1

Figure 2

proresults-forblog

Such commitment to patient health reveals two interesting things about UCB: First, patients really do come first; and secondly, UCB is committed to understanding how their products work in the real world, and not just in clinical trials. It is not easy to take a leadership position in an innovative arena such as this, and we are proud to partner with such a company.

screen-shot-2010-12-03-at-95803-amAs of today, members of our Epilepsy Community have completed more than 1,300 PRO surveys. By the end of 2010, many of you will have contributed to the largest patient-led study ever in epilepsy.

Are you in on what our communities already know?  Share…and then compare. If you understand your condition in the broader context, you’ll be a PRO too.

1. Dupont et al. “Use of Tablet Personal Computers for Sensitive Patient-Reported Information.”  Journal of Supportive Oncology. Volume 7, Number 3. May/June 2009.

PatientsLikeMe member AMGraham


Share and Compare: From the mouths of patients

Posted December 3rd, 2010 by

screen-shot-2010-12-03-at-41141-pmAs we round out our “Share and Compare” week, here are a few quotes that some of our members have shared regarding the impact of being able to see where you fit in.

You’ll read in the quotes how patients like you can find solace in the fact that there are others out there experiencing the same thing;  you’ll see how your sharing is helping others make sense of their treatment dosages; and you’ll feel through these quotes how personal sharing can be within a community like ours.  Behind all the graphs and charts we’ve shared this week are people – here’s what they have to say.

Stay tuned next week for a few follow-up pieces on Share and Compare, as well as a new topic series.  Have you learned from sharing and comparing?  Add a comment below, post in the forum or connect with us through private message inside the site.

– – –

“It’s so nice to share information with others who are experiencing the same thing. The most frustrating thing I remember as a teenager was when doctors couldn’t explain exactly what was happening to me or why. I used to feel as if I did something wrong and that’s why I was ‘different’. The more information we can share with each other, the better.”
Epilepsy community member

“I feel like a breath of fresh air of hope; just knowing I’m not alone and there are others who experience side effects, have good and bad days even experience combination seizures.”
Epilepsy community member

“[It] really puts my mind at ease and sounds like my [treatment] dosage is not that unusual this soon after my transplant. I look forward to eventually taking it down.”
Transplant community member

“I am so thankful [to have] found this site…where I can, after a fashion, talk and identify with others on the PD bus. We understand. We are similarly bound.”
Parkinson’s community member

“…just being able to see so many people that are going through the same thing I am (literally sorted by [treatment] and [diagnosis]) – makes it feel just a little bit more in control for me.”
Fibromyalgia community member

PatientsLikeMe member e_morgan


Share and Compare Your Health Experience

Posted December 2nd, 2010 by

“I want to know if what I’m going through is normal for a patient like me.” This is a sentiment we’ve heard from so many of you throughout our communities.  This week, we’re focusing our blog on some of the ways we’re trying to help you put your experiences in context.  It’s a concept we like to call “share and compare.”

From a design standpoint, we’ve been focusing on how to help you see how your status relates to other patients with the same condition.  By showing where you fit within a larger group, you can begin to see if your experiences are typical.  The more data you share, the more you can compare your experience to others.

Here are some of the changes we’ve made this year along these lines, as well as the benefits to patients like you:

  1. Treatment pages: Now you can view the most commonly prescribed treatments for your condition and see where you fit in with the treatments you’re taking.  Want to see if the dosage you’re on is in line with others?  Now, you can.  (You can also use this to discuss dosage questions with your doctor)
  2. alprazolamreport-forblog

  3. Individual treatment reports: When you view a report for an individual treatment, you can get some additional context, including how your reasons taken, side effects and dosages relate to those reported by other patients.  Again, it’s a great way to see if your side effects or dosages are typical, and then use this information in your discussions with your healthcare team.
  4. txtoplevel-forblog

  5. Condition history: When you answer questions in the condition history section of your profile, you can now see how you compare to the larger community based those items, including diagnosis status, age at diagnosis, condition type, family history and more.  Are there a lot of other newly diagnosed patients like you?  Maybe there are a lot more people with many years of experience with your condition to whom you can reach out to for support.  All of this data helps you compare your experiences with those of the larger community.

ms_condhistory-forblog

Over the next few days, we’ll continue to highlight how patients like you are putting their experiences in context and what value they’re getting from being able to compare it with others.  Sign up for an email alert of new blogs or just stay tuned right here!

PatientsLikeMe member kbrigham


Share and Compare: How are you feeling? Find out with InstantMe!

Posted December 1st, 2010 by

Here at PatientsLikeMe we strive to give you the tools and functionalities you want and need to gain insights into your conditions, including putting your experiences in context.  Today, we’re introducing a new tool in all of our communities called “InstantMe.”  screen-shot-2010-12-01-at-91856-am1Want to chart how you’re feeling day in and day out?  Now you can.

All you need to do for InstantMe is answer this simple question – How are you feeling now?  You can answer this question as many times in a day or week as you’d like. InstantMe will appear on your profile to add more context to the other experiences you share there, as well as on your Doctor Visit Sheets so you can communicate more effectively about how treatment changes have impacted the whole you.  You can even sign up for a reminder and answer InstantMe right over email.

Why InstantMe?  Many of you already use the measurement tools we have in place to put your experiences in context  – for example, there’s the mood map, quality of life scale, or clinical rating scales (e.g., ALS functional rating scale). These instruments (which you typically fill out weekly or monthly) measure the severity and impact of medical conditions on your life.  But what about all the fluctuations that all of us experience day-to-day or even throughout one day? Maybe they’re due to our health, our treatments, or perhaps something totally unrelated, like holiday planning or work.

For a couple of years, mood community members have been using a tool called “InstantMood.”  They answer one simple question (“How would you rate your mood right now?”) and then choose an answer (“Very good,” “Good,” “Neutral,” “Bad,” or “Very bad.”)  Members can even add a short note (140 characters) to each rating to remind them what was happening at that time. It’s a popular functionality and helps members put context around changes in their overall condition.  Here are some trends members can watch with InstantMood:

Instant mood trends by day of the week Instant mood trends by time of day

What we’ve seen and heard from the Mood community is that this ability to “instantly” rate how they’re feeling is useful at both the individual and community level.  As a user, you give a little something and get instant feedback.  We like that concept.  In fact, you’ll be hearing a lot more about it in the blogs to follow this week, so stay tuned.

With this in mind, we’re excited to roll out InstantMe for all of our communities (thanks in part to what we learned from Mood).  Because we know there are more things that can influence how you feel than mood alone and we believe it’s important to have measurements that get at your whole well-being, we have changed the question slightly.

It’s a simple question, but probably one of the most important ones to ask you.  So tell us – How are you feeling now?

PatientsLikeMe member pwicks