4 posts tagged “personal health data”

A Day in the Life of PatientsLikeMe Community Manager Jeanette DeVita

Posted August 3rd, 2012 by

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features employees from different departments.  So far, we’ve interviewed User Experience Engineer Cris NecocheaResearch Assistant Shivani Bhargava, Office Manager Alison Dutton, Research Scientist Timothy Vaughan, Biz Dev’er Arianne Graham and Product Manager Maureen Oakes.  Today we’d like to introduce you to Jeanette DeVita, who came on board as a Community Manager in February 2011.

PatientsLikeMe Community Manager Jeanette DeVita

1.  What were your first impressions upon joining PatientsLikeMe?

I was very excited to see the job listing for a Community Manager at PatientsLikeMe. I have a background in nonprofits, and I was looking to shift to the for-profit sector. I was thrilled to find a job at a company that was for-profit but with the heart of a nonprofit.

It was clear that the employees at PatientsLikeMe wanted to make a difference in the lives of patients and that was something I wanted to do too. It’s important to me to feel like my work makes the world a better place and working at PatientsLikeMe gives me that feeling.

I was also impressed and excited by the company culture at PatientsLikeMe.  Every Friday there’s a lunchtime presentation and everyone eats together; there are no cubicles, there’s interesting artwork on the walls; teams take meetings sitting on couches together and blow off steam by playing Guitar Hero and ping pong.

2.  Tell us what’s involved in being a PatientsLikeMe Community Manager.

Every day I start by reading my messages from patients who have contacted me on the site. I work on a team of Community Managers with Emma Willey and Liz Morgan, so if I need feedback before working through an issue, I talk to the rest of my team. Then I move on to the forum. I read the new conversations in the communities I moderate, and I tag threads [with a topic category] as I read them so that they are easier for patients to find. I also check out the rest of the site, answer questions about how to find information and try to help patients connect with one another and get their questions answered.

Being a Community Manager is a role that involves wearing a lot of hats. On the site I’m a hostess, a source of information, tech support, librarian, conflict manager and a listening ear. On the larger PatientsLikeMe team, I represent the voice of the patient, and I relay what I learn from patients back to my colleagues.

3.  Congratulations on becoming a mom! Did you manage your health online during your pregnancy? Have you kept up with that since your son was born?

Thanks so much! I started monitoring my health online as I prepared to get pregnant, and I did it through my entire pregnancy. I began with monitoring my temperature and then I kept track of my exercise, my weight, my size and, of course, I kept a close eye on the calendar. Since I suddenly had so many appointments to keep track of, I found myself more reliant than ever on my calendar.

I saw a strong correlation in how I felt with how much walking I did and how much water I drank. By monitoring those two pieces of data I was able to quickly learn that I felt great when I drank 64+ ounces of water a day and walked to and from work.  I felt not so great when I didn’t.

After my son was born, I was glad I had already adjusted to keeping detailed records about myself and my health.  Now I monitor his feedings, sleep and other baby business using an app recommended to me by a friend. It makes it much easier to remember when he last ate when my husband and I both have an app that tells us.  I also continue to keep up with my exercise online and how many steps I take each day. I find it motivating, and I’m hooked on personal data now.

4.  What kind of comments from PatientsLikeMe members really make your day?

I love hearing that a patient’s life has been changed because of PatientsLikeMe. For example, when a patient connects with others like them for the first time; when they find real feedback and experiences from other patients who have already tried a treatment they are considering; or when learn about home modifications or life-changing tools from other patients, I go home feeling great about the work I do. Life can be very lonely, and life with a serious medical condition can be even more isolating. Making that burden a little easier for our users to bear is a great reason to come to work in the morning.

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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 an Analytics Strategist, Marketing Analyst and more at the moment.


What can happen when patients have access to one another’s data

Posted May 29th, 2008 by

JMIR logo

There is growing interest in and demand for access to personal health information and tools to review and discuss this information. But why? What do patients get from reviewing health information? More research is needed to know the answer.To examine this question and understand what value users get from one another’s information, Michael Massagli and I began to read through, categorize, and analyze some of the comments users have posted on the site. We are happy to say that the results of our study were published this week in the peer-reviewed open access journal, the Journal of Medical Internet Research, in the paper entitled Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data.

We, at PatientsLikeMe, think that patients can get more value from recording their health information when they share the results with one another – so that patients can learn not only from their own experience but also from the experience of others.As a first study, we looked at just one behavior on the site, the comments users post on one another’s profile. In many ways comments are not central to the site – forum and private messaging support more in depth conversations. But, because they are located on the profile itself, users tend to talk about data within these comments. In a qualitative analysis of a specific set of comments, we noticed a few themes. These were:

  1. Members read other people’s profiles to find an informed person of whom to ask advice. They see, for example, that the user tried a particular treatment or has had a specific experience then asks him or her about the it (e.g. “I see you went on Bipap and your functional level improved, did Bipap really help that much?“)
  2. Members offer personally acquired knowledge to those most likely to benefit from it on topics like treating a symptom, or getting an assistive device (e.g. one patient commented: “I see you note emotional lability. I had that very bad, but now I take a compound of dextromethorphan and quinidine that controls it beautifully”).
  3. As members review one another’s profiles, they identify particular points of similarity. Based on that similarity they begin a conversation and make an effort to establish an ongoing relationship (e.g. users says things like: I see we both had the same type of onset and are about the same age and health status, I would like to be available to compare health progress).

While this is just a first study of only one element of the site, this work describes what our users are capable of – how they are able to identify and dissect important features of the profile and use data to inform themselves and one another.

Understanding how people use data will also help us design increasingly sophisticated tools to support data-centered conversations on the site. Our goal is to help users receive the maximum benefit from sharing health information and experience. For more information, please take a look at the full paper – it is freely available online.


PatientsLikeMe member jeanafrost