The Value of Openness: The PatientsLikeMe Blog

“Young cancer patients have a lot to say as well as questions to ask, but struggle to find quality information sources where they can express this.  It is even harder to find an innovative platform to visit. I believe a mobile app created exclusively for teenage cancer patients would make their quest for information not just desirable, but also entertaining. As such, the possibilities of this competition are really exciting.”

- Sarunas Narbutas, 23, patient living with Chronic Myelogenous Leukemia

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.

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our November edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

“Got dishes in the sink that won’t get washed today. I just feel so worthless. I could lie down and go to sleep right now I’m so tired.”

Can you relate to this description of fatigue?  Defined as a feeling of weariness, tiredness or lack of energy, fatigue is the number one symptom reported at PatientsLikeMe.  It affects more than 40,000 of you and plays a role in so many different conditions, from rheumatoid arthritis (RA) to Lyme disease to ALS.  What’s more, over half of you rate your fatigue as “moderate” or “severe.”

Yet fatigue can be much more than feeling tired or unmotivated.  As the quote above illustrates, it can also impact your state of mind…and even your physical mobility.  Many of you report fatigue can lead to depressed mood, emotional lability, demoralization, negative thoughts, anxiety, lack of concentration, brain fog and increased pain.

So, what are 40,000+ of you doing to cope with this debilitating yet “invisible” symptom?  Check out the top reported treatments as well as the hundreds of treatment evaluations for medications such as Provigil, Amantadine, Nuvigil and Adderall; supplements like Vitamin B; and lifestyle modifications such as Naps (which come in particularly handy around the holidays!). You can also join in on the numerous forum discussions about fatigue to pick up tips and advice, including how some of you have tried to describe your fatigue to others using The Spoon Theory.

The first step is realizing that you are not alone.  The second is learning there are things you can do from the best source of all – other patients.

- Kate, Emma, Liz, Jeanette & Sharry

JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of these active threads below.  Then jump in with your own questions and answers.

• Chronic illness and marriage issues (PatientsLikeMe Room)
• Will power can beat mental illness? (Mental Health Room)
• Getting pregnant after you have MS (MS Room)
• What are you tired of? (Fibromyalgia & CFS Room)
• When to take your pain meds (PatientsLikeMe Room)

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

THIS MONTH’S SITE IMPROVEMENTS

Thanks for your continued feedback about improving the site.  Here are our top functionality enhancements for November.

NEW CONDITION PAGES
Have you seen our redesigned condition pages?  They have a brand new look and feel (as the image below illustrates), and they have been re-organized to share data around five central questions.  For example, what’s it like to have this condition?  What do people take to treat it?  We hope you enjoy and learn even more from the new layout (which, for now, you have to be logged in to see).

SYMPTOMS THAT ARE ACTUALLY CONDITIONS
Back when the PatientsLikeMe platform only supported a limited number of conditions, many of you added other conditions as symptoms.  With our recent site changes, you can now correctly show those “symptoms” as medical conditions on your profile, so we’ve merged them for you.  For example, if osteoporosis was listed as a symptom on your profile, you’ll now find it with your other conditions.  Be sure to check your condition list to make sure it’s up-to-date and accurate.  These changes allow you to add more details to your condition history, and they also make PatientsLikeMe’s symptom and treatment reports more useful.

A MYRIAD OF MESSAGING UPGRADES
Noticed anything different about My Messages on PatientsLikeMe (formerly called your Inbox)?  Here are the recent enhancements:

• Are you an email scanner? You can now see an inline preview of any new message you receive as well as view more messages on the first page.
• Search, sort and click! Now, you can click anywhere (not just on the subject) to open a message, search for a subject or username, and sort your messages a variety of ways.
• When you send a message, we’ll now auto-complete the “To” field with members you’ve written before, and the text box will expand as you type. (This also happens with forum replies.)

Today, December 1st, is World AIDS Day.  30 years after the first reports of AIDS in the United States, HIV – the virus that can lead to AIDS – is still a reality for 1.1 million Americans.  Complicating matters is that fact that one in every five people living with HIV in the United States is unaware that he or she is infected.

That’s why, despite increased awareness of HIV/AIDS, we still need to do more to ensure that every American who may be at risk gets tested. PatientsLikeMe is joining the AIDS.gov initiative in “Facing AIDS” today.  This social media campaign is an easy way to show your support of The National HIV/AIDS Strategy – and it’s inspired by the current trend of taking photos while holding a sign with a message written on it.  Are you ready to join the campaign too?

As the video above illustrates, here’s how it works:

1. Write. Download a sign and add a message about why you are “Facing AIDS.”
2. Snap. Take a photo holding your sign and upload it to the Facing AIDS Gallery.
3. Share. Use social media (Facebook, Twitter, your blog, etc.) to share your photo.

What else can you do?  Remind people that you can locate your local HIV testing site by texting your zip code to “KNOWIT” (566948) or using the HIV/AIDS Prevention and Service Provider Locator, which includes maps and directions.   Also, check out and share our video about how one member has faced HIV/AIDS for more than 25 years (it has 40,000+ views on YouTube so far!), and if you’re a PatientsLikeMe member, subscribe to AIDS.gov’s profile page for updates.

Only by facing AIDS can we prevent it.