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.


One Comment

  1. I’m interested in how you define and rank “use of PLM” with 6 month changes in fibromyalgia. I know that my health has improved in the past 6 months. And I suspect it is due to new products I’m using such as alpha lipoic acid, Lauricidin (monolaurin antimicrobial), better quality multi vit/min, hi potency B’s, C, and CoEQ10 and increased attention to practices such as meditation, guided visualization and napping.

    I also know that my use of the website’s personal medical info and participation in forum posts has declined significantly. But, I don’t believe that this change in PLM use is as linked to my improved health as it might appear on the surface. I wish I were tracking my med info more, but since I am using the forum much much less, I am not logging on to PLM and thus not prompted to track my med info.

    And I’m not using the forum much because of the type of conversations occurring there now, compared to what I had found in the forum 8-12 months ago. I think much of this change is due to the large volume of new members who are posting in the CFS/FM forum. These members are often relatively new to the chronic illness life and have attitudes, concerns, and issues they wish to discuss that don’t relate to what interests me.

    I think the two primary characteristics that give me reason to avoid the forum are the chronic complaining (everything – from my ankle itches to my family hates me and would be better without me) and the lack of intelligent interest in alternative medicine approaches, particularly mindbody.

    I understand what is behind the first issue for many people – the utter dismay and horror that their lives have taken this 180 turn. I don’t judge them for their chronic whining, but don’t want to read it, either. I would read it and respond if the writer wanted some meaningful feedback, but most (not all) people seem to want pity and validation that they are victims, which isn’t anything I wish to support. I don’t judge them for their lack of interest in mindbody practices, either, but don’t find them interesting to converse with because they are not conversant in that topic.

    So I wanted you to add this parameter of why someone is using PLM less when their fibromyalgia health has improved because I believe that my improvement just happened to coincide with the influx of new people and how that altered the conversations in the forum.

    And now I wish to go and add to my med profile so that the products and practices that have helped me so much are being tracked for others to find and perhaps apply to themselves. Or for researchers like you to learn what does help people and how that changes their relationship with PLM in a causative fashion.

    I guess one more forum comment is needed on this subject. Over the past 6 months or so people have posted article from other sources about top treatments for fm or cfs and similar info. That has stimulated a conversation about our medical data in profiles and many people in the forum have said that they don’t keep that data updated because they don’t want to help Big Pharma. That they expect people to learn about what helps them from what they write in the forum.

    I know that a PLM researcher commented that when he does a review of PLM patient data on effective treatments, he uses the treatment evaluation information and not the more generic PFRS and symptom evaluation data. I’ve found that the evaluations most people do are very limited. People are prompted by the canned questions to respond on whether they stopped treatment due to specific reasons (doctor’s advice/side-effects/course of trtmt ended – etc). So people might choose “side-effects” and rank these as “moderate” using the canned scale of severity offered, but this tells me little about what they actually experienced.

    I wrote this, more or less, in a forum message when the subject was being discussed. And the few responses to it were all negative; basically saying that they didn’t care about the eval info or the medical data in the profiles except that which they used personally. And many people don’t use it personally. It seems to me that people with medical or science backgrounds and a few others give this data mgmt importance and everyone else in the cfs/fm forum either have almost no data (not even one star) or only keep the “instant me” and PFRS up to date.

    So I did an evaluation of “friends and social life” in my profile using the forum as the basis. I put this kind of info (what I just related above) in my evaluation so that PLM researchers would be able to learn why some people are not giving quality info and why others become disengaged with the site and use it less.

    As a scientist, I am now wondering about the self-selecting feature of the medical data in the profiles. Since it is an optional task and people can put in whatever they choose, you are receiving more data from people who are more proactive and aware of their personal health than from the general public.

    This would skew results, perhaps a great deal, as it omits all those who see not maintaining their med profile as a blow against the hated Big Pharma (which I do agree with, but not to the point of withholding info), who are keeping themselves so private all they post is their age and gender (another subject I can understand altho I don’t share it totally), and everyone who doesn’t pay enough attention or care to pay attention to their specific health issues and treatments.

    I’m curious about how you analyze the data to account for that self-selecting aspect.

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