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.

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.

Did you know today is World AIDS Day? Thanks to the many different organizations (including those like AIDS.gov) recognizing the day and raising awareness about HIV and AIDS.

Now a few years old, the PatientsLikeMe HIV community currently has more than 2,800 people with HIV sharing their health information to help others learn from their experiences. In honor of today, here’s a snapshot of what patients like you are sharing and learning about in this community.

DID YOU ALSO KNOW…

• You can all find patients like you by searching by CD4 count, viral load, years since infection and more.
• In a PatientsLikeMe research study published in the Journal of Medical Internet Research, we revealed:
  • 63% of HIV community members on PatientsLikeMe agreed they had better understanding of the consequences of taking a “drug holiday” after using our site
  • 23% agreed they had decided to start therapy or counseling after interacting with others on the site
  • 29% agreed PatientsLikeMe had helped them decide to start taking antiretroviral drugs
• PatientsLikeMe research scientist Mike Massagli spoke earlier this year in a PatientsLikeMeOnCall^TM podcast interview about the benefits of measuring your quality of life.  How’s your quality of life been recently?  You can measure yours too.

How are our members treating their condition?

• Members in the HIV community are using more than 793 treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, therapies, and more.
• The top lifestyle modifications reported by our patients includes avoiding alcohol, diet and exercise and stop smoking.
• The most widely used antiviral drugs (or cocktails) reported by members are Atripla, Truvada and Norvir; the top 3 supplements are Multivitamins, Omega 3 Fish Oil and Vitamin C.

What are their major symptoms?

• The 5 most common primary symptoms reported include: Chills/Fever, decreased appetite, night sweats, skin problems and swollen glands.

What are they talking about?

• Some of the top topics “tagged” in our forum discussions to date include blood counts, support groups, relationships, newly diagnosed patients and side effects.

Last Fall, PatientsLikeMe introduced our Quality of Life (QoL) tool which is displayed on the profiles of members in the HIV community.  By answering a few questions, patients can see how HIV is impacting them – physically, socially and mentally.  Today, this same QoL measure is used by thousands of patients across the HIV community and other communities, such as Epilepsy and Organ Transplants.

PatientsLikeMe Research Scientist, Michael Massagli, recently spoke with us in a PatientsLikeMeOnCall^TM podcast interview about the goal, outcomes and benefits to measuring your quality of life. Listen here:

“[In the HIV community], we’ve taken a look at the relationship between QoL and CD4 level and find the average score of patients with CD4 below 200 is significantly lower for physical, mental and social well-being.  People with the most comprised immune systems have worse quality of life, across all 3 domains, than other patients… “

To date, several of our members have at least three QoL scores on their profile.  Mike says, “Multiple uses of the QoL instrument by the same person over time helps researchers determine how small a change in QoL scores is meaningful to patients or important enough to evaluate how a treatment is working.”

Adds R&D Director, Paul Wicks, “We all know that measuring disease is important; tumor size in cancer, blood tests in cardiovascular disease, or frequency of seizures in epilepsy, for instance. Increasingly though, clinicians and researchers are coming to realize that these measures don’t give the whole story; they’re missing the real impact of a condition on patient’s ability to function. You might have high blood pressure but it doesn’t affect your life at all, or you might have a relatively low amount of pain (as measured by, say a 0-10 pain scale), but it could be interfering with your work life a great deal.”

So have you completed a quality of life survey recently?  If so, you’ll also notice a cool new feature on the site that helps you better understand how your quality of life compares to others.  When you take 5 minutes to answer the 24 questions in the survey, here’s what you’ll see:

As Mike says in his podcast, this is just the beginning.  Stay tuned for more about quality of life measurements.

Last week, PatientsLikeMe presented a keynote address at the inaugural Medicine 2.0 Congress in Toronto, Canada in front of 200 researchers from 20 countries. A new, annual international conference on Web 2.0 (social web) applications in health and medicine, this year’s event was centered around the theme: “Building Virtual Communities and Social Networking Applications for Patients and Consumers.” You can view the entire conference proceedings online.  The event is organized by Gunther Eysenbach, MD MPH, who is the editor and publisher of the Journal of Medical Internet Research, where Jeana Frost and I recently published our paper – “Social Uses of Personal Health Information Within PatientsLikeMe.” 

This was a great opportunity to update the research community on how our patient members are engaging in data-driven discussions about their health.  In my presentation, I gave an overview of the site, summarized some of our published research results, and provided examples of how patients are using our forum and profile comment tools to better understand their own and other’s experience of symptoms and treatments.  What really impressed this audience is that PatientsLikeMe is delivering the best of what “medicine 2.0″ can potentially deliver to the healthcare consumer, and patients are using it.  It’s very powerful for others to see how patients are talking with one another about treatment and symptoms experiences (supported by data in their profiles) to achieve better living.  This is exactly what can happen when we put “Patients First,” and give them a community to support the right interaction at the right time.  Our patient members today feel empowered to take back their health, and this kind of commitment will lead to better research, better healthcare and better quality of life.

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.