The Value of Openness: The PatientsLikeMe Blog

With 13,000+ members, the Multiple Sclerosis (MS) community is currently the largest community at PatientsLikeMe. Many of our members are just as active online as they are off. There are a countless number of ways for people to get involved in supporting research for the disease, and many patients choose to participate in the thousands of walks and runs that take place year round. At PatientsLikeMe, our members have a voice in research by sharing data about their condition.  However, we also support patients’ decision to take their involvement offline.

Earlier this year, PatientsLikeMe introduced a program to support and sponsor Walk/Run teams. We are encouraged by the success this initiative has already seen since its inception. To date, hundreds of people across all our communities have participated in teams sponsored by PatientsLikeMe, with many of those teams from our MS community.

Want to see some of our patients in action? Head on over to the PatientsLikeMe YouTube page at www.youtube.com/PatientsLikeMeMS and check out some of your fellow patients on the move.  All the pictures from the video and more are also in our Facebook photo album, so check them out (and while you’re there don’t forget to friend us either!) Thanks to all who participated in the program and gave us the material for this first video. Keep on walkin’ everyone!

(Special props to our summer intern, Shane, for editing the video and producing the music for it!)

We do not live our lives alone. We live our lives in collaboration with others. We communicate our needs and our goals, and together we work to achieve them. This is exceptionally true for families and individuals dealing with illness. Whether you’re dealing with depression, or pain, or perhaps the fear and stigma of HIV, or the impairment that comes from MS, Parkinson’s or ALS, what helps us the most is when those around us reach out and share their support and advice.

You would think that your ability to share would be as much your right as speech, but is it? It’s not clear that is true in healthcare today, nor is it clear that such a right will be protected tomorrow. Privacy is also a right – a right to not share what you do not want shared. It’s a fair and just expectation that the doctors and clinicians you employ to support you in your illness will not share your information without your permission. Today, I fear that privacy has become much more than a right; it has become a goal. When that happens, people begin to find ways to make it difficult to share in the name of privacy.

More than once we have been asked by people in the medical system whether patients are allowed to share information with each other like they do on PatientsLikeMe. In fact, in some countries you can read their rules in a certain way and reasonably deduce that this type of sharing is not allowed. It is vitally important that we do not let this become a reality in the U.S.  There are some that would take away your right to share because they do not believe you are competent to weigh the risks and benefits of sharing, and make a sound decision. Imagine being forced to sign a document before you email a friend on PatientsLikeMe with a question about a symptom? This could be a possible consequence of ill intentioned privacy legislation.

We are working to ensure that sharing is preserved as a right. We know that you share with us, and each other, because you trust that we will do the right thing with that knowledge. At PatientsLikeMe, we are working hard to ensure we earn your trust every step of the way. To do this, we focus our energies on ways to help discover new things about each disease here and support the research system. We do this in the spirit of openness espoused in our Openness Philosophy. We work to be transparent about our business model and our decisions, and try to be accessible to you to answer your questions as you participate in our communities.

It remains our hope that you are wowed like we are about what is possible when we work together to make our healthcare system, and our lives, better. We have seen so much healing between all of you here on PatientsLikeMe, and it is because we are all sharing together – not alone.

PatientsLikeMe was recently asked to testify before the U.S. Department of Health and Human Services National Committee for Vital and Health Statistics (NCVHS). The NCVHS Subcommittee on Privacy, Confidentiality and Security is responsible for exploring these aforementioned issues as they relate to healthcare, and ran a 3-day hearing to spur informative dialogue about the future of e-healthcare. I was honored to represent PatientsLikeMe, and the thousands of patient members of our communities, as I testified on all of our behalf at that hearing.

As I said in the hearing, openness is what is and can help patients. It’s what matters. We believe in the concept called “The Network Patient” - an approach that puts patients first by giving you what you need to know when you need to know it, and empowering you to act on that information. As members of PatientsLikeMe, you have chosen to embrace openness and take control of your health. You volunteer your health information, your experiences, your life - all in an effort to improve your care, support others, and move research forward.

Here are a few excerpts from our prepared testimony statement that expand on privacy, openness and the future of our health system.

“From our experiences at PatientsLikeMe, we know patients are aware of the issues. They understand and weigh the risks and benefits, and are intelligently making rational choices about where they are comfortable sharing information and how their information will be used to help. If we infringe on this right to share or speak (in the interest of preventing discrimination), we are preventing the flow of information and, by our read, acting contrary to the values on which our country was founded.

Privacy is also more than a legal concept, it is also a philosophical concept. A modern focus on privacy as a goal, not as a right, has moved the line to the point that medicine is slowed, treatments are delayed, and patients die for failure to have what they need when they need it. We have substituted real harm for mostly theoretical harm. We would even argue that the philosophical focus on privacy is a bad thing. We believe that openness is much more powerful concept than privacy in medicine, and one that gives patients the power to take control of their health…

We have to begin to work on building a society that allows the variation in human health and the variation in human condition, one that allows people to be philosophically created equal. We need to work on building a society where information is not used to discriminate, but to assist and support and improve. Restricting the flow of information will not advance solving this problem.

This is not a simple transformation, but we believe it is inevitable. The major privacy issues are not only about health records, but the invisible trail of “breadcrumbs” we leave behind us day to day in life. Health is not a separate concept. It is an integrated concept and, in an integrated world, we have to decide how to build a society that can handle the reality that not all are healthy. We need to work together to get the most productivity and life from all of us.

We believe openness can lead the way to such a society.”

The full testimony is available here and posted to the NCVHS website (along with audio archive of the 5/20/09 hearing). A transcript will also be made available soon. These hearings, and of course our blog, are open to the public for comment on these issues. In the spirit of sharing, please share your thoughts with us here.

PatientsLikeMe is proud to announce a pilot program in our multiple sclerosis community which helps patients submit treatment-related adverse events directly to the The U.S. Food and Drug Administration (FDA) through our site.

“Adverse events” are severe side effects or events that occur as a result of using a medication, medical product or device.  Understanding when these events occur helps the FDA better regulate the pharmaceutical and medical product industries to protect consumer safety and bring safer, more effective products to market.

We are excited about this pilot as it marks the first time ever that an online patient community has helped its members identify and report adverse events.  We recently submitted our first batch of reports to the FDA’s MedWatch system.

Patients like you are becoming more and more influential in their treatment decisions. No longer are you simply consumers of pharmaceuticals and medical products, you are customers.  In this emerging world, you have become better educated about your treatment options, the risk and benefits of different treatments, and your overall quality of health.  Now you have the opportunity to tell the FDA if you’ve had an adverse event.

Welcome to the new world.

Today, the PatientsLikeMe Multiple Sclerosis (MS) community welcomed its 10,000th patient member!

As we end 2008, more than 10,000 patients in our community are coming together to share their life experiences on PatientsLikeMe. How much experience is that? Try more than 32,000 YEARS of collective experience with MS.

More members than ever are sharing in-depth health information with each other, having repeatedly seen the value that this provides to others (and to themselves). Our forum is where members convene to find support and talk about all sorts of health-related topics, including MS-related treatments. Copaxone, Avonex, Tysabri, Baclofen, Rebif, Betaseron, LDN and 4-AP and others top the list of treatments discussed this year. In addition to our dedicated treatment evaluation reports, several members also use the forum to keep journals of their experiences with specific treatments to better help others understand these meds. There is also a good deal of discussion on dealing with other aspects of MS, such as depression, steroids, family and relationships, etc. To date, the forum has more than 17,000 posts.

Ready to share your experiences with us in 2009? Check us out to see what patients like you are doing to live their best life with MS.   Happy New Year!

PatientsLikeMe believes in the benefits of openly sharing health information.  That is why we are happy to spread the word about National Family History Day, which had its fifth anniversary on Thanksgiving 2008.

As families gather this holiday weekend, National Family History Day encourages families to become familiar with the health history of previous generations.  At PatientsLikeMe, we encourage everyone to take advantage of the family time to identify, discuss, and make a written record of family health problems.  Many health disorders such as ALS, Parkinson’s, Multiple Sclerosis, heart disease, stroke, and diabetes, run in families and across generations. Knowing your family history gives insight into your current health status, and lifestyles and environmental factors that may affect your disease risk.

While there is talk of personalized medicine being on the horizon, collecting and interpreting family history information is a currently available, and practical personalized health tool. Health care professionals can use this valuable information to design individualized care programs to reduce risk of disease and promote overall health.

So while you’re eating that feast and the leftovers this weekend, ask your family about their health history.  It’s good conversation and can help everyone.  Happy National Family History Day!

Openness.  Privacy.  These philosophies stand in direct opposition in the question of which is better for consumer health.  Should people be open with their health information or private?  Certainly there are times for both, right?

Not according to some privacy advocates.  On October 22, 2008, Deven McGraw from the Center for Democracy and Technology cited a survey on their blog entitled “National Dialogue on Health Information Technology and Privacy” that 67% of respondents were either “somewhat” or “very concerned” about the privacy of their personal medical records.  A glass half-full perspective would say that one-third of respondents think openness is appropriate, at least somewhat.  McGraw summed up the post this way:

Without appropriate protections for privacy and security in the healthcare system, patients will withhold information from the health care providers - or decide not to seek treatment - because of fears about how their personal health information could be misused. Ignoring concerns about privacy - or inadequately address[ing] them - will significantly threaten public trust in these new e-health technologies, and in our overall healthcare system.

It may be a stretch to say make a blanket statement that patients will decide not to seek treatment based on fears about how their information would be used.  Let’s hear from patients themselves.  We asked members of our Multiple Sclerosis community to respond to this statement in our forum.  Here are excerpts from some of their responses:

1. I would withhold info or not seek care due to privacy concerns.  I was thrown into MS and was very forthcoming with everyone, including my former employer.  If I had to do it all over again, I would keep my mouth shut, with the exception of telling my family.  I like the anonymous nature of PLM.  I don’t include my full name so I’m comfortable in noting my dx and symptoms.

2. unfortunately, there really isn’t enough privacy anymore. I just figure to heck with it. If they really want my info they’ll find a way to get it anyways.

3. I believe the benefits of participating in a health care system using online records outweigh privacy concerns. What privacy? Given the resources, anyone can find out anything about my background.

4. Like many, I have mixed feelings about this.  Working in healthcare, I know that there is a HUGE advantage to having all your medical info readily available to any provider.  I can think of many times where I’ve had a patient who couldn’t tell me their history, or what meds they’re taking, and struggling to figure out what was going on.  On the other hand, I also know, from personal experience, that having unauthorized people get access to your health info can have major negative consequences.

5. That [online medical records is] inevitable is probable,but I still believe that we should have the right to say who knows what,when,and if about ourselves.Its about freedom of choice,will and about human dignity!

6. My medical records are open, wanna see? Just look at PLM!!!!!

What a popular question!  We got dozens of responses in less then 24 hours.  What we found is that the one-in-three ratio holds.  Of our patient member responses, two out of three have either not sought treatment or wouldn’t seek treatment because of privacy concerns.  The other third believes that privacy doesn’t exist or doesn’t help people.  Although anecdotal, this is quite a finding and reflects what we believe to be the true nature of this debate:  There are times for openness and times for privacy.  Patients simply want control over when each is employed.

Do we ultimately know that sharing health information online is “safe”?  We answer that question in one of our FAQs, but the short answer is we don’t know.  Yes, there are risks that information will be misused.  But what we also know is that there is a benefit/risk equation for people and their health.  And when research is slow and treatment options are scarce, patients turn to each other for help and support.  They can’t wait 10 years or more for traditional clinical research.  Sharing becomes the best option.  The internet then becomes the most powerful medium to share information, identify new best practices, and ultimately create new medical evidence.

Our Openness Philosophy discusses how sharing health information is actually a way to democratize health data for the benefit of all stakeholders, patients, physicians, researchers, caregivers, and industry as well.  We can’t answer the question for you posed in the title.  Only you can decide if sharing health information online is for you.  We just want to give you the opportunity if and when you’re ready.

We would love to hear what you think!  Continue the conversation by leaving us a comment.

PatientsLikeMe was recently one of the sponsors for the 2008 MS Challenge Walk on Cape Cod, a three-day, 50-mile event held on September 5-7, 2008. More than 620 walkers participated, each raising a minimum of $1,500.  Overall the event raised close to $1.4 million to benefit Multiple Sclerosis (MS) education, support, advocacy and research.

The walkers persevered through some very nasty weather during parts of the walk.  Fortunately, the last day was a spectacular early Fall day in New England, as the event ended with the parade of walkers onto the Hyannis common.

We had the chance to talk to  many participants over the course of the three days, and showed them how PatientsLikeMe can help them share their health data and experiences and learn from others. We showed them a public member’s profile to demonstrate how they could use enter treatments, symptoms and outcomes and chart the course of their disease over time.  They were also very excited to see how this information is aggregated in our Treatment Reports.  Whether they wanted to share their positive experiences with a specific treatment, or were looking for more information about a newly considered treatment, walkers definitely saw great value in our treatment report/evaluation system.

This event is also where our MS quilt made its public debut.  The quilt, made up of individual squares created by many of our charter MS members, brings home the support aspects of the site.   It highlights some of the people who have helped create and grow the site into one of the largest and most vibrant MS communities online today, with more than 7,600 members from around the world.  The process of actually creating the quilt also represents what PatientsLikeMe is about:  pulling together patients’ experiences and data in a way that allows both the individual and comprehensive view of the disease.

This was an inspirational event. It was rewarding to learn first-hand from people about the challenges they face dealing with MS, and to offer them a resource where they can find and learn from others going through similar challenges.

Members of our Multiple Sclerosis (MS) community have been discussing this story in the Boston Globe which reports severe adverse events experienced by two European MS patients on the drug Tysabri (Natalizumab). Tysabri is a monoclonal antibody which seems to have a potent effect on MS; the original trial published in the New England Journal of Medicine reported that compared to placebo, MS patients on Tysabri had a 42% lower risk of sustained disability progression over two years, and a 68% reduction in the risk of clinical relapse at one year. Compared to the small and imperceptible benefits from other drugs available at the time, this provided real hope for thousands of patients.

Tysabri was voluntarily withdrawn in 2005, however, after a small number of cases of a rare condition called progressive multifocal leukoencephalopathy (PML). This extremely rare but usually fatal adverse event seemed particularly prone to happen in patients also taking immunosuppressive drugs; part of the standard toolkit in treating MS. It was reintroduced in 2006 but only within a strict protocol to minimize the risk of adverse events.

Since the early days of our MS community, Tysabri has been a hot topic of conversation with several patients reporting that their frequency of relapses had dropped substantially and even that some of their symptoms such as bladder dysfunction had improved too. In total, PatientsLikeMe has 297 patients taking Tysabri, although 35 patients stopped taking it, with the most common reasons being doctor’s advice, side effects, or a perceived lack of efficacy. By recording symptoms on their profile pages, our users inform each other about their experiences with Tysabri. Each patient, then is better informed to make their own decision; and by sharing their outcomes they help the whole community to make an informed choice, too.

The one question on the minds of our MS users is “now what”? A disease like MS is hard to understand for those that don’t have it, it’s an “invisible illness” characterized by fatigue, cognitive problems, and pain. When you have symptoms like this impacting upon your quality of life, how can you make the right choice? Given that nothing in our lives is risk free, what is an acceptable balance of risk between relief from suffering for several years and a small risk of death from an adverse event?

Faced with worsening symptoms, empowered patients educate themselves about the potential risks of any treatment; and along with their doctors make the choice that’s right for them. One of our MS members puts it this way:

I understand those who want the PML issue to be understood because it is a very scary thing, but I said to myself that I’d rather fight back with the strongest drug now instead of waiting for that flare up that one day is irreversible.

That is a person who is trying to make the best health care decision based on all of the available information. The choice is yours and we understand it’s not an easy one to make.

At PatientsLikeMe, our Core Values drive all of our business processes including selection of partners. We are proud to announce our three newest partnerships which include both nonprofit and academic institutions. Note: At all times, our members can access information about what we do with their data, how we make money, and who is partnering with us.

Accelerated Cure Project for Multiple Sclerosis - a national nonprofit organization dedicated to curing MS by determining its causes.

Myelin Repair Foundation - the only non-profit medical research foundation solely focused on identifying myelin repair drug targets that will lead to treatments for multiple sclerosis.

Penn State Milton S. Hershey Medical Center - one of the leading research institutions in the field, particularly around issues of quality of life (QOL) for patients suffering from ALS.

What do these partnerships mean? Together, we can open the healthcare dialogue by sharing and learning from one another. As we say in our Openness Philosophy, “we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.

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.

According to a December 2007 iCrossing survey cited by Jane Sarasohn-Kahn in her Health Populi blog “34% of Americans turn to social media for health research.”

Jane points to PatientsLikeMe and others as “proof of the reality of social media in health is alive and well and healing”, and observes that “increasing numbers of people are reaching out to others for more than the kind of support they might have found in the Compuserve health interest groups in the 1980s; they’re finding practical solutions to chronic health challenges”

Interesting reading, especially her response to one commenter that “In the case of info for PatientsLikeMe, the database on drug dosing, quality of life and outcomes throughout the MS cycle is probably richer than any other single source on the globe”.

Our members are very enthusiastic about the value generated by sharing their information. So much so that recently two of our members decided to don their hard-earned PatientsLikeMe t-shirts and share their experiences using PatientsLikeMe with their local MS support group. They recruited several new members at the meeting and gave more information about PatientsLikeMe to everyone. Our members believe that the more information we share, the easier it will be for patients and doctors to see what’s working for others and for scientists to use the data to develop new treatments faster. This is a great example of patients helping other patients and we love seeing our members share, online and in real-life. Thanks!

Learning from each other can be addictive, and even fun at times. One of our more prolific (and outspoken and creative) MS members, Keeping On, decided to celebrate her 1000th post with a musical salute to some of the most humorous posts and posters in our MS community. So she got together with another witty member, sacleveand, to produce and star the video “We Have MS Together!”

Six months after its public launch, the MS PatientsLikeMe community includes over 1 in 200 MS patients in the U.S. and the rate of growth continues to escalate.

To mark the occasion and experiment with new community tools, we put together the first PatientsLikeMe community report. In this report, we begin to paint a portrait of the MS community, who is in it, and how the community compares with previous research on MS. This post features portions of the report.

In the descriptive section we discuss characteristics of the user base such as what types of MS users have. As you can see in the figure below, all types of MS are represented with 61% of users report having relapsing and remitting MS.

The report also explores research questions that the size of our community now allows us to address. For example, we look at the many ways MS first manifests itself - the variety of initial symptoms. In the figure below, we chart how two different types of MS (relapsing-remitting and secondary progressive) first appeared. The most common first symptoms for both types were “sensory changes” and “optic neuritis.” But “Difficulties walking” was a more common first symptom for relapsing-remitting MS than for secondary progressive MS.

If you have MS or are a caregiver to someone with MS, take a look at the report posted on PatientsLikeMe. Note: requires registration on the site.

Based on feedback, we will be integrating some of the elements into an new upcoming area on PatientsLikeMe. Stay tuned!