The Value of Openness: The PatientsLikeMe Blog

PatientsLikeMe was a proud sponsor of the National Parkinson’s Foundation Young-Onset Parkinson’s Network (YOPN) Conference in Atlanta, GA last week.

The event, coordinated by and for people living with Young-Onset Parkinson Disease (YOPD), was a huge success. Paul Wicks and I (Maureen Oakes) enjoyed working at the booth, meeting many of our current members and spotting PatientsLikeMe t-shirts in the crowd. Paul was a presenter at the conference, and his session “Taking Control of Your Parkinson’s by Sharing Online” was well attended and received by current and future PatientsLikeMe members. One of the themes that came up repeatedly at the conference is that living with YOPD, like any other life-changing illness, can be a very isolating experience. The YOPN Conference presented its attendees the opportunity to spend the weekend learning more about their condition, expanding their knowledge about the latest treatments and choices, and most importantly, meeting other patients like them.

As a community manager at PatientsLikeMe, much of my job is watching. I read the forum to observe what people are discussing, I look for questions and ideas on how we can improve different areas of the site, and watch as members learn and relationships grow. But, one of my favorite things to watch is when our members meet each other in real life. As they did at the Unity Walk, many PatientsLikeMe Parkinson’s members wore “badges” with their usernames and pictures to help identify each other as they met their online friends face-to-face for the first time. These relationships blossom very quickly because they are rooted by their shared experiences, and that is a wonderful thing to watch.

Are you on Facebook? We are! Simply search for “PatientsLikeMe” to find our new company page. Once there, click “Become A Fan,” and a “My Pages” link will be added to your profile. Remember, Facebook is an open platform that anyone can view and isn’t part of PatientsLikeMe. Therefore, any information you share about you is open to the 100 million Facebook members. Thanks for spreading the word about us to your Facebook friends.

Currently, our Facebook page features photos from the AIDS Walk Boston, which drew over 20,000 participants and raised $1.2 million. We were proud to be a sponsor of the Wellness Festival that accompanied the successful June 1st event. Where can you see us next? We’re a sponsor of the National Parkinson’s Foundation’s 6th Annual Young-Onset Parkinson’s Network Conference, August 7th-9th in Atlanta, Georgia. Staffers Paul Wicks, a speaker at the conference, and Maureen Oakes will be present.

PatientsLikeMe was a proud sponsor of the 14th Annual Parkinson’s Unity Walk in New York City this past Saturday (April 26, 2008). Jeff Cole, Kate Brigham, Maureen Oakes and I (Lori Scanlon) were all onsite working at our sponsored booth. The event, which raised more than $1.3 million in donations this year, brought together thousands of people with Parkinson’s, their families and friends, support groups, non-profits and sponsoring organizations — all dedicated to advancing research and helping find a cure.

I said this onsite and I’ll say it again: The energy at the event was absolutely intoxicating! In addition to meeting hundreds of people who stopped by our booth to learn more about PatientsLikeMe, we were thrilled to finally meet some of our very own Parkinson’s Community members (and their families) face-to-face for the first time.

“Unity” is the perfect word to describe this event. We got to literally see thousands of people in the same place with the same goal, and it was nothing less than inspiring. We got to meet our members, who not only share their health information and experiences so openly on our site, but also opened their arms to welcome us “in”…it touched us all truly and deeply. We got to “feel the love,” as our members wore badges to represent those members who couldn’t be there. We then came home and read forum posts from the many more members who were at home watching us on the webcast and cheering on the walkers.

Here are a couple of many photos from the Unity Walk. Please take it all in. There was sunshine. There was energy. The smiles. The laughs. The love. The purpose. Can you feel it? Can you feel the (comm)unity? Good. Now, please pass it on…

This month marks the two-year anniversary of our flagship ALS community. It’s amazing to reflect on what we’ve achieved in just two short years. Not only did we build the world’s largest treatment and outcome sharing communities for ALS (1,800+ patients), MS (4,500+ patients) and Parkinson’s (1,300+ patients), but this year we began evolving into the powerful research platform we always envisioned we could be.

At the heart of this research initiative are our new community reports, which analyze the makeup of our patient communities. In January, we released our first MS Community Report covering factors such as first symptoms, age of diagnosis, disease type, etc. Recently we released our ALS Community Report, with the Parkinson’s Community Report to follow shortly. You can find the much-anticipated results on the blog as well as the ALS forum.

But that’s just the beginning. Your commitment to collaborative learning has now driven our evolution to the next level. On March 7th, we launched the ALS Lithium Study. As co-founder Jamie Heywood wrote in a recent blog entry, “Today, we allow patients to begin to answer how to treat ALS.” What could be more central to our mission than that? We are delighted to collaborate with Humberto Macedo, a patient, and Karen Felzer, PhD, whose father has ALS, on the study. “Together…we will run the first real-time, real-world, open and non-blinded, patient-driven trial,” wrote Heywood.

The question at hand is: Does lithium slow ALS? With almost 150 patients participating to date, we already have more than eight times the number of participants as the most recent published study about lithium and ALS. Stay tuned as this exciting and unprecedented study continues. As always, thanks to everyone - whether involved in the study or not - for sharing your treatment data. You made this study possible, and we intend for it to be the first of many across our communities. The age of patient-led research is here!

Finally, we are thrilled to announce the March 23rd launch of our beta community for Mood Conditions, which coincided with the New York Times Magazine article, Practicing Patients. If you know anyone affected by Mood Conditions such as depression, bipolar disorder, obsessive compulsive disorder (OCD) or anxiety, please invite him or her to join PatientsLikeMe today.

It’s been six months since we launched our first newsletter, and a lot has happened at PatientsLikeMe in that time. With the holiday season now upon us, we thought we should give thanks for the amazing strides made in all our communities. There is power in numbers, as they say, and we are grateful to every new member for increasing our ability to effect change.

ALS Community
We are proud to announce that our flagship ALS community has grown by nearly 50% in the last six months to 1,450 patients. We’re even prouder that it now attracts the equivalent of 10% of all newly diagnosed ALS patients in the US. To share what researchers can learn from this model for openness, our own Paul Wicks, PhD, will present a lecture on social medicine at the upcoming 18th Annual Symposium on ALS/MND, which we are co-sponsoring. Please stop by the PatientsLikeMe booth if you’ll be there!

MS and Parkinson’s Communities
Launched in late spring, our MS and Parkinson’s communities have also experienced staggering, if not meteoric, growth. We are delighted to report that our MS community recently hit a major milestone when it surpassed the 2,000-member mark(!) while our Parkinson’s community now has more than 800 members. We welcome and thank all of these new members. Please keep inviting others to join! This vast pool of shared data is what will help make PatientsLikeMe a juggernaut in MS and Parkinson’s research.

HIV Community
The PatientsLikeMe family continues to expand as our newest community, HIV, began accepting charter members last month. We expect to formally launch early next year, and we look forward to growing this fledgling community to its fullest potential. Please help us in this effort. If you know anyone affected by HIV, please invite him or her to join PatientsLikeMe today.

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one patient each month to find out more about how he or she approaches life. This month we are pleased to feature Lynette1400, a two-star member.

What are you thankful for?

A loving husband and family, wonderful friends, having had an interesting and exciting life, Social Security, Medicare, and pensions!

What do you have an abundance in your life?

A) Love and laughter.
B) Time to do all the things I want to do but didn’t have time for when I worked. Because of this, I am busier than ever.

What is your favorite holiday memory?

There have been so many. When my three children were little, we spent Christmas Day at my mother’s. After dinner, she played the piano and my Dad and the whole family, including my three brother’s families, stood around the piano and sang Christmas carols while the children played with their new toys.

It was like the Christmases in our family when I was a child. After the kitchen was cleaned up, the families would all sit around card tables and play card games. The grown-ups would patiently teach us children how to play. Then after that we would have a supper of turkey sandwiches and leftovers. Then on the long drive home we four children would all fall asleep

Describe a typical Thanksgiving in your family.

We have a traditional Thanksgiving dinner with all the fixings, which is planned for about 4 p.m., but we usually get to sit down by 5 or 6 pm. Present are my husband, me, my son and his wife, my daughter and a friend, my brother-in-law and a neighbor of his. I try to include those who do not have other plans for the day or those without family here. Everyone brings something.

It is a lovely and very tiring day for me. This year my son and daughter-in-law are having the celebration at their home, and in addition to the above guests, her parents, a girlfriend and her daughter and her brother will be there. She sets up a badminton net and the younger ones participate. She is a very good cook. I bring two pumpkin pies and probably two chocolate pecan pies.

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one member each month to find out more about how he or she approaches life. This month we are pleased to feature chethk, a two-star member.

Where do you find joy?

I find joy by being with my family, friends, co-workers, and customers; participating in life’s daily adventures and challenges; and giving 110% effort with every task I undertake everyday.

What person do you admire most?

My wife Kate for being the mother of my two children and putting up with me.

How have you evolved since your diagnosis?

I have had Parkinson’s for 14 years. It started as a nuisance, it is now a disability. I don’t believe a person evolves when facing a progressive disease; rather, a person either resolves to fight it everyday or give in to the symptoms and wither away. I have made the choice to find a way to overcome the ever-changing symptoms of Parkinson’s everyday.

What have you learned from PatientsLikeMe?

I have learned there are others with PD who have the same emotions, fears, anger, and resolve to fight this disease until a cure is found. We do not want others to feel sorry that we have Parkinson’s, but we do appreciate their acceptance of our outward symptoms and everyone’s financial donations to medical research that will lead to a cure.

PatientsLikeMe, the leading treatment and outcome sharing website for people with life-changing conditions, has been recognized by Business 2.0 and CNN Money.com as one of their 2007 “Next Disruptors: 15 Companies That Will Change The World“.

“We are honored to receive this recognition. However, we know we still have much to do in order to achieve our mission of helping patients learn from shared real-world outcomes so we can all contribute to finding the best treatment options,” explains co-founder and CEO, Benjamin Heywood.

PatientsLikeMe has taken an extraordinary position regarding patient data believing that openness and sharing, rather than strict privacy, is the best way for people to take control of their health care, improve outcomes, and accelerate research. The company has its Openness Philosophy posted on its website for anyone to view.

PatientsLikeMe also shares aggregated data from its members in order to share data with the world, recently announcing their data repository in ALS, Multiple Sclerosis and Parkinson’s.

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one member each month to find out more about how he or she approaches life. This month we are pleased to feature iowa, a two-star member.

What is your favorite time of day?

Well, when I was first diagnosed 2 1/2 years ago, it was the first five minutes [of the day]; things went downhill in succeeding minutes due to my very low stamina.

Nowadays my favorite time happens to be the first five minutes as well, but as a prelude to a wonderful day. That’s when my wonderful husband of 33 years brings me my morning cup of coffee in bed made to exact specifications. The coffee I mean. In these five minutes while I am regaining consciousness, I sip the sweet brew and reflect on how blessed I am and thank the Blesser.

And then, being an incurable Type A, I make a list of some sort, which, in retrospect, is kind of silly since being an incurable Type E (easily-distracted), I rarely stick to it. My second favorite time of day is naptime, from which simple pleasure I am rarely distracted.

What makes you laugh?

Almost anything, mostly because laughter releases endorphins and having frugal Dutch ancestors, I figure any drugs I can get for nothing is a plus. Plus, it loosens up my face, like when I began using the Neupro patch, which lists as possible side effects compulsive behavior such as A) “increased sexual desire” and B) “gambling too much.” Three minutes after I’d applied the first patch, my wonderful husband of 33 years queries expectantly, “Well??” To which I responded, “Nothing in category A, but ya wanna play Bingo?”

What would people be surprised to learn about you?

Considering what I’ve already shared, probably not a blessed thing. I’m your ordinary 52-year-old coffee-sipping, nap-loving, laughing, Bingo-playing gal. And not many of you would be surprised that I have found being diagnosed with PD to be a God-rediscovering experience, since [many of] you have had a similar experience.

How has PatientsLikeMe improved your life?

It might be too soon to know, but I suspect reading about and comparing notes with other ordinary real people will be helpful, not to mention inspiring. Inspiration is good. Right up there with laughter. And coffee. And naps.

This month is momentous because we’re celebrating a major milestone at PatientsLikeMe. We now have over 1,000 PALS in our community. Thank you for making PatientsLikeMe your home and spreading the word to other PALS. The more patients we have, the more we learn from each other.

We are also thrilled to announce the debut of two new communities for Parkinson’s disease and multiple sclerosis (MS). If you know people with either condition, invite them to join PatientsLikeMe. We want them to know what you’ve already learned – that when patients share their data, it empowers everyone.