4 posts tagged “multiple sclerosis community”

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


Community Report: The composition and experience of the Multiple Sclerosis community

Posted January 9th, 2008 by

Six months after its public launch, the MS PatientsLikeMe community includes over 1 in 200 MS patients in the U.S. and the rate of growth continues to escalate.

To mark the occasion and experiment with new community tools, we put together the first PatientsLikeMe community report. In this report, we begin to paint a portrait of the MS community, who is in it, and how the community compares with previous research on MS. This post features portions of the report.

In the descriptive section we discuss characteristics of the user base such as what types of MS users have. As you can see in the figure below, all types of MS are represented with 61% of users report having relapsing and remitting MS.

Distribution of MS types on PatientsLikeMe

The report also explores research questions that the size of our community now allows us to address. For example, we look at the many ways MS first manifests itself – the variety of initial symptoms. In the figure below, we chart how two different types of MS (relapsing-remitting and secondary progressive) first appeared. The most common first symptoms for both types were “sensory changes” and “optic neuritis.” But “Difficulties walking” was a more common first symptom for relapsing-remitting MS than for secondary progressive MS.

First symptom by MS type

If you have MS or are a caregiver to someone with MS, take a look at the report posted on PatientsLikeMe. Note: requires registration on the site.

Based on feedback, we will be integrating some of the elements into an new upcoming area on PatientsLikeMe. Stay tuned!

PatientsLikeMe member jfrost