2 posts tagged “data visualizations”

Turning Stories into Data…and Data into Knowledge

Posted June 16th, 2011 by

How do you make sense of all the information and stories that come with chronic illness? That’s exactly the challenge that the Patient Experience Team has taken on at PatientsLikeMe. Our goal is to create data visualizations that help you gain insight into your health, recognize emerging patterns and learn from one another’s experiences.

Adventures in Data Visualization

Recently, I flew to Seattle to give a talk entitled “Adventures in Data Visualization” as part of the Web App Masters Tour (WAMT). (I’ll also be presenting it again at the final WAMT event in Minneapolis, which takes place June 27-28th.) During my talk, I share our process for translating people’s individual health stories into data – which, unlike text-based stories, are something that can be measured, compared and visualized.

Data visualizations are great at helping people process complicated information quickly and answer questions that can be much harder to answer other ways. For example, is my experience normal? How are my treatments affecting my symptoms? Is my quality of life improving? What happens if I stop taking my medication? With data visualization, you can see patterns that correspond with changes to your medications, lifestyle modifications and more.

Ultimately, PatientsLikeMe is creating a shared visual language that allows your story to be part of a larger story, one that is enriched by data. We are continually working to make it easier for you to learn from the data you share, and that patients like you are sharing as well. Why is this so important? It allows you to put your story in context and find others like you. Ultimately, it allows you to see what you can do to achieve the best health outcome possible.

Have you “seen” something on your profile charts – or that of other patients – that helped you answer your questions? Share your experiences with data visualization in the comments section.

PatientsLikeMe member kbrigham


One for All: The Connected Community of PatientsLikeMe

Posted December 7th, 2010 by

Comments between Epilepsy patients on PatientsLikeMe

PatientsLikeMe is dedicated to building a platform for the open sharing of personal health data.  So far, our community of patients have shared over 600,000 outcome surveys, 300,000 treatment histories, and 2.3 million symptom reports.   We believe this enormous collection of health data will dramatically improve how patients manage their conditions.

But there are more benefits to joining a community of patients like those on PatientsLikeMe than just sharing data: the social support from interacting with other patients has a real effect on improving patient outcomes.  In a recent study published in the Journal for Medical Internet Research (JMIR), our research team found that nearly half of survey respondents (n = 559, 42%) agreed that the site had helped them find another patient who had helped them understand what it was like to take a specific treatment for their condition.  Furthermore, the survey shows that those patients on PatientsLikeMe who make close relationships with other members receive significantly more benefits from those who do not.

So it is worth taking a moment to look at just how extensive the social connections are on PatientsLikeMe, and how many patients have reached out to other patients and helped improve their lives.

There are many ways to connect with other patients on PatientsLikeMe, ranging from communal conversation in our forums to direct one-on-one personal messages.  While some of this dialogue is centered around sharing of health information and experiences, a part of it is purely meant as conversational discussion about everyday life.  All of these interactions are important, because they help tie a community together.  Here’s a glance at some of the ways you’ve connected:

Forum

  • You’ve created 1.2 million posts composed of 94 million words about 86,048 topics
  • 21,865 of you have created at least one post, and 54,839 of you have viewed at least one post
  • You’ve marked posts as “helpful” 1.2 million times

Personal Messages

  • 25,062 of you have sent a total of 751,668 messages
  • 723 of you have individually sent over 100 messages

Patient Profile Pages

  • You’ve viewed our 80,000 patient profile pages over 15 million times
  • 11,874 of you have left over 156,196 comments on other members’ profile pages

(Note: numbers are across all communities.)

While these numbers show just how much sharing has been going on, the following graph illustrates what the connections are like between our members.  In this graph, the dots represent patients, and the lines between them connect any two patients who have shared at least 5 personal messages together.  Note how many patients are interconnected.   By reaching out to one another for support, conversation, data sharing and more, you’ve created a universe of dialogue that has never existed amongst patients like you.

Personal Messages between Patients on PatientsLikeMe

Click for full-sized version. A graph showing personal messages made between some of the patients on PatientsLikeMe. The dots represent patients, and a line represents at least 5 personal messages between them.

Moreover, what you’re sharing with each other through these various connections represents the largest data set of its kind linking conversations to outcomes and overall health experience. This week on the blog, we’ll delve into some of these connections that have been spurred by some of our members.  However, we also want to recognize that even the silent contributors (those connecting behind the scenes or outside of the forum spotlight) are as much to thank for this open network.  All for one and one for all.

(About the title image. This graph shows all comments made between Epilepsy patients on PatientsLikeMe. The dots represent patients, and the lines between them represent at least one comment made. Note the highly connected network of patients in the center. Click for full-sized image.)

PatientsLikeMe member jcole