2 posts tagged “Journal Club”

A Day in the Life of PatientsLikeMe Research Scientist Mike Massagli

Posted December 6th, 2011 by

What’s it like to work at PatientsLikeMe?  We’ll be revealing just that with our new blog series “A Day in the Life,” which features various employees from different departments.  To start this new series off with a veteran perspective, we interviewed Research Scientist Mike Massagli, PhD, one of the longest tenured employees of the company.  Find out what changes he’s witnessed since joining PatientsLikeMe in June 2007.

Research Scientist Mike Massagli Talking to a Patient at Wellness Fair Following the 2008 AIDS Walk Boston

1.   What’s it been like to watch the company evolve over the last four years?

It has been both interesting and gratifying.  Interesting to watch how we evolved from our initial communities – ALS, MS and Parkinson’s, all essentially neurological conditions – to come to grips with other types of chronic disease and to try and achieve a necessary balance between general tools that would be useful to any patient and disease- or condition-specific tools that will be relevant to patients when they are needed.  What has been gratifying is that we have always been able to find people to rise to these challenges.  We’ve found users of PatientsLikeMe very willing to help (and forgiving when things haven’t gone perfectly smoothly), so that we are now in a position to provide all patients with the potential benefits of PatientsLikeMe.

That’s still a work in progress, of course, but the site is getting better all the time.  I am optimistic that we are getting closer to realizing the ultimate power of PatientsLikeMe, which is to fully show the distribution of responses to treatments and help match patients to the part of that distribution that is actually relevant to them.

2.  Talk about PatientsLikeMe’s Journal Club speaker series and why you started it.

The Journal Club is something we started in January 2009 to provide some space and time outside of the routine workflow to discuss (usually) substantive topics relating to PatientsLikeMe.  The goals include:

  • giving people who are working on something behind the scenes some visibility and an opportunity for feedback;
  • sharing research that has implications for the data we collect or how we collect and present it;
  • talking about features in other websites that could have utility in PatientsLikeMe
  • sharing information or ideas about how to foster the growth and ‘health’ of online communities; and
  • presenting intriguing solutions to seemingly technical problems that may have broader implications for the user experience.

We also bring outside speakers who can inform these areas of discourse.  Everyone at PatientsLikeMe attends and is enthusiastic about learning and critically examining new ideas and issues.

3.  What research projects are you working on at the moment?

At the moment I’m finishing up a couple of projects focusing on the experience of organ transplant patients.  For one of them I examined forum posts about issues related to medication adherence, then combined this with a review of the literature and prior measures of adherence problems to design a survey that will provide information describing patient preferences for possible adherence support mechanisms.  In the other project, a survey is being conducted to test a range of questions about patient quality of life that will hopefully result in a more patient-centered set of questions than currently exists.

In addition to those projects, I’m looking at survey data about six-month changes in the status of fibromyalgia patients and testing how that is associated with the use of PatientsLikeMe.  And I’m working with the team to implement revisions to the Multiple Sclerosis Rating Scale (MSRS).

4.  What do you like best about being part of the PatientsLikeMe team?

Being part of the PatientsLikeMe team is a unique opportunity to build something that has the power to vastly improve medicine.  By capturing patient reports of their experience of care and treatment on a large scale and in real time, we can improve understanding of how treatments work and for whom they work IRL (in real life), and be a source of information for people that simply has not existed before.

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Interested in making a difference in patients’ lives?  Check out our Careers page to see our current job openings.  Headquartered in Cambridge, Massachusetts, PatientsLikeMe is looking for a Senior User Experience Designer, Marketing Associate, Research Analyst and more at the moment.


PatientsLikeMeOnCall: From Open Data to Actionable Data

Posted July 22nd, 2011 by

Pillbox's Rapid Identification System for Unknown Pills

Every Friday, PatientsLikeMe holds “Journal Club” in our Boston headquarters with a different guest speaker. Last week we were privileged to hear from Dave Hale, Project Manager for Pillbox, a National Library of Medicine (NLM) and Federal Drug Administration (FDA) patient safety initiative. And thanks to PatientsLikeMeOnCall’s new podcast series “It’s Friday – Let’s Journal Club,” you’ll get to hear from him too.

After Journal Club last week, PatientsLikeMe’s Aaron Fleishman sat down with Hale to learn more about Pillbox’s goal of creating a one-stop resource for identifying unknown pills as well as how the project aligns with the Open Government Initiative enacted by President Obama. Tune in below to hear how Hale and his team took drug labeling data from “open to actionable” by listening closely to affected communities.