5 posts in the category “Treat Us Right”

Treat Us Right: The Promise of Patient-Centric Healthcare

Posted February 11th, 2011 by

community-developmentAt PatientsLikeMe, we strive to put the interests of you, the patient, first in everything we do.  After all, you are the customers of the healthcare industry, and you deserve to have a say about the products and services created for you.

Unfortunately, your needs and opinions often haven’t had the influence on the decision-making processes of insurance companies and pharmaceutical manufacturers.  Medical providers have often underserved you in favor of competing interests and more revenue.

The good news is times are changing.  Your voice, the patient voice, is coming to the forefront, where it should be.  Every day new companies approach us asking, “How can I connect with patients?  I need to know what they think and what they’re feeling.  I want to improve their health outcomes.”  These are the partners we want to work with because they are committed to using your insights to change the very nature of healthcare.  And their numbers are growing.

Here are two examples of how you have already impacted their decisions:

  • How do we make this treatment easy for patients to use? A pharmaceutical manufacturer approached us with several options for a new drug’s packaging.  Over 650 of you spoke up in a survey, picking the most user-friendly choice based on your experience.  Guess which packaging the pharmaceutical company went with?  The one the majority of you liked.
  • How do we help patients distinguish their symptoms? Another pharmaceutical company wanted to help patients like you understand your symptoms better so you could seek appropriate treatment.  By partnering with PatientsLikeMe, they found the solution.  58% (n=221) of patients like you surveyed said that the tools developed by PatientsLikeMe helped you better understand your symptoms and outcomes.  That insight has led to even more projects – and they really want to hear from you now!

Thanks to all of you who gave input in these surveys.  There will be more opportunities to be heard soon, so keep it up.  The world is finally listening!

PatientsLikeMe member AMGraham


Treat Us Right: Comparing Cymbalta and Lyrica in the Fibromyalgia Community

Posted December 16th, 2010 by

Since its launch in November 2008, our PatientsLikeMe Fibromyalgia Community has served as a place for more than 11,000 fibromyalgia patients to share with, find, and learn from others.  Over the past 2 years, thousands of you have reported using Pfizer’s Lyrica® and Eli Lilly’s Cymbalta® as prescribed treatments for your fibromyalgia.

PatientsLikeMe recently analyzed the experiences you’ve shared in our Fibromyalgia Community about Lyrica and Cymbalta.  Here are three key insights we learned:

  1. Many of you experience little efficacy from either treatment. More than 40% of Lyrica patients and 50% of Cymbalta patients on our site perceive slight to no efficacy or simply cannot tell.  By comparison, only 20% of Lyrica patients and 15% of Cymbalta patients on our site perceive major efficacy.
  2. efficacy

  3. Those of you using Cymbalta experience fewer side effects than those of you using Lyrica. 26% of Cymbalta patients on our site report no side effects, versus 16% for Lyrica. Additionally, 29% of Lyrica patients on our site report severe side effects, versus 19% for Cymbalta. It is not surprising that more Lyrica patients than Cymbalta patients discontinue treatment and do so more quickly.
  4. sideeffects

  5. Many of you attribute weight gain to Lyrica. In fact, of all side effects reported for either treatment, weight gain on Lyrica was the most frequently reported. By contrast as shown below, Cymbalta patients on our site did not frequently report weight gain as a side effect.
  6. weightgain

So what makes this data interesting?

  • There remains a clear unmet need for developing better treatments in fibromyalgia. Based upon your real-world experiences, the existing treatment options are effective for only a minority of patients but cause side effects in a majority of them.  Developing new solutions for fibromyalgia that improve upon the safety and efficacy of existing treatment options remains an opportunity.
  • This data provides important insights for those of you using – or considering using – one of these treatments. From what you’ve shared with us on PatientsLikeMe, we see that Lyrica patients more frequently report both major efficacy and severe side effects than Cymbalta patients.  Additionally, you frequently report experiencing little to no efficacy on either treatment.  One of the major benefits of sharing is how much it helps others like you know what to expect and whether or not an experience on Lyrica or Cymbalta is normal.
  • This data illuminates similarities and differences between clinical trial data and real-world data. For example, weight gain in fibromyalgia patients was listed as a side effect in Lyrica clinical trials.  However, other side effects were more frequently reported in Lyrica clinical trials than weight gain, including dizziness, somnolence (daytime sleepiness) and headaches.  By contrast, your real-world experiences put weight gain atop the list of Lyrica side effects on PatientsLikeMe.  It’s important that we continue to develop a deeper understanding of the factors driving these similarities and differences in clinical trial data and real-world data.

Learning about the impact treatments have in the real world is only made possible by patients like you who embrace openness and give selflessly to other patients on PatientsLikeMe.  You are proof positive that the voice of one patient can become the voice of many, and that your real-world experiences are not only meaningful – they are essential to understanding what works, what doesn’t, and what needs to be improved.

You keep on saying it and we’ll keep on relaying it:  Treat Us Right.

PatientsLikeMe member cfidyk


Treat Us Right: Mapping What Patients Think About Medications

Posted December 15th, 2010 by

One of the ways we can better understand whether you, as patients, are having a positive or negative treatment experience is to “listen” to the conversation you’re having in our forum.  By understanding whether you are having a positive, negative, or neutral experience with a particular treatment you are taking or are considering taking, we can measure the impact of different events on the overall community.

For example, in 2008 we measured the impact on our multiple sclerosis community of a corporate announcement by Biogen about a serious and sometimes fatal side effect of Tysabri (occurs in about 1 in 1000 patients).  The results revealed that patients were indeed frightened by the announcement, but these patients were also so positive about Tysabri’s benefits, that most planned to continue taking the medication regardless of the risk.

Visualizing Perception of Sentiment
We visualize movement in your sentiment via perceptual maps and longitudinal bar charts.  The perceptual map here shows how patient perception (indicated via forum conversations in one disease community) is moving regarding different medications over four periods of time. (Note: each color represents one medication;  the shading represents the change of perception over time with the darkest shade being most recent).  From period to period, it becomes clear which medications you perceive work the best (i.e., Medication D for efficacy) and those that have the most side effects (i.e., Medication A for safety).

chart1

A stacked bar chart graph is a way to further break down the sentiment.  For example, the chart below shows the volume of posts about Medication E’s perceived efficacy, whether positive, negative, or neutral by month over time.  This visual allows us to evaluate if certain events impact your perceived efficacy of a particular medication; to create this graph, we look both at volume of posts (spikes) as well as proportion of posts by sentiment (colors).

chart2

Why is that important?  Because studies have shown that people who stay on their medications long term get the best health outcomes.  By measuring patient sentiment of discussions, we can predict if patients may discontinue taking their medications and why.  Knowing that, along with the information you share as part of your profiles, helps in research of how outcomes change over time and the impact of peer influence.

These methods are also used in creating our PatientsLikeMeListenTM service for industry partners.  Their interest is in understanding aggregate perceptions and what influences patient behavior so that they can keep patients like you on medication.  As part of this service, we show them which types of patients are most likely to stay on medication appropriately and which ones might be better off changing medications.

Our goal in analyzing patient sentiment overall and providing the PatientsLikeMeListenTM service for industry partners is to amplify your voice to anyone listening:  Treat Us Right.

PatientsLikeMe member dwilliams


Treat Us Right: Comparing our Community to the General Population

Posted December 14th, 2010 by

Our recent series entitled Share and Compare focused on how patients like you can better answer the question, “How do I put my experience in context?” The answer, in part, comes from how much information you share to help create that context of real-world patient experiences.  Think of it this way – with every piece of information you share, you are contributing directly to research.

When we’re conducting research, one of the things we look at is how similar or different you are to the populations at large.  We even have minimum criteria for a person’s data to be usable.  For example, if you indicate whether you’re male or female, you make it that much easier in determining how you “fit in.”  That one piece of information helps us know if our population is in fact representative of a disease, or whether we’re only getting one specific type of patient (e.g., males with fibromyalgia who don’t have much pain).  If we do get more of one type of patient, it becomes more difficult to draw any conclusions from that population and apply them to the general public.

So, you may be wondering why we need to compare to the published literature/general public?  Why can’t we just say that our conclusions apply to our users and leave it at that? The answer to this question has many parts:

  1. We have the ability to positively impact everyone with disease, not just our current members.  Ideally, we will apply knowledge gained through research in our communities to all people living with diseases.
  2. From a research perspective, we have to know our biases, and how to correct for them if possible. For example, we tend to have more women than men in our populations.  By knowing that, we can “correct” for it in our analyses by making sure our proportions are correct when we look at a sample of users.
  3. We can know how our discoveries fit in with other information known about a disease.  For example, let’s say we figure out that patients who have had fibromyalgia for 15+ years improve their quality of life by doing Treatment X.  If we don’t know how many patients have had fibromyalgia for 15 years or how many do Treatment X and don’t improve, the discovery loses some of its power from lack of context.  Perhaps it isn’t a discovery at all!  However, if we have data from our community to answer those questions and can compare it to published literature, we can trust more in our discoveries.

Here’s a great example of what can happen with the data you share.  Recently, we evaluated our fibromyalgia community characteristics with the Demographics Survey sent out early in 2010.  For some of our communities, the survey had fantastic results.  We are now able to declare with confidence that our community very closely matches the fibromyalgia community at large (Table 1).

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By maintaining your profiles and keeping accurate records of side effects, medications, background information, and outcomes (such as quality of life), you are participating in groundbreaking research that is already yielding fantastic results. Our research team has presented at prestigious conferences and written dozens of abstracts and papers. Working together, PatientsLikeMe has discovered new symptoms and compared treatment efficacy; we are also working towards creating an accurate picture of how medications work in the real world so you get the right treatment for you. This is just beginning.

PatientsLikeMe member cbrownstein


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.

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