The Value of Openness: The PatientsLikeMe Blog

We are excited to present the first member video for the PatientsLikeMe Mood community and what better way to kick it off than with one that represents the voice of the patient.

In June, we launched The Patient Voice report series with the inaugural report on inpatient therapy, a topic often discussed by our Mood community members.  At the time of the report, 63% of patients on our site reported an efficacy of “moderate” or “major” for inpatient therapy.

Many patients have already benefited from the information in the report, so we decided to create a video that highlights our patient members’ tips and experiences. Check it out on our YouTube or Facebook page, but if you visit the latter don’t forget to become our fan!

If you want to know more about patients’ experiences with inpatient therapy, you can download the full report here. It includes even more tips and personal stories, interesting facts about the PatientsLikeMe community and a worksheet that will help you make the most out of your hospital stay. Of course, none of this would have been possible if patients like you were not willing to share. We are always eager to hear what you have to say, so please share on.

Once again, special thanks to our summer intern, Shane, for his work on the video!

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.

Today’s patient has a loud and strong voice.  At PatientsLikeMe, we hear you.  You’re saying, “I know this disease, I know how it acts in the real-world, and it’s time to share that with others.”

With thousands of patients sharing data and experiences every day on our site, we’ve decided to launch a report series that takes what you, the patient, knows and shares it with you, the patient community at-large.  For obvious reasons, we’re calling it The Patient Voice.

A series of reports addressing topics in each of our disease communities, The Patient Voice is a collection of wisdom, sentiments and experiences shared by patients like you regarding important issues you face today.  The reports include PatientsLikeMe member tips, suggested checklists and questions to ask yourself, and real-world patient experiences, as well as some fun facts from about the PatientsLikeMe community.

The first in the series is from our Mood Conditions Community, representing patients with depression, anxiety, bipolar, OCD and PTSD, on the topic of inpatient therapy (or hospitalization).   It’s a topic that comes up quite a bit in our forum, and patients are openly sharing their positive (and negative) experiences with one another.  We’re now sharing some of the positive experiences with you.  Take a look at the free report and let us know what you think.  Share it with your friends and loved ones who might find it useful.  And, please, join the conversation on PatientsLikeMe today.  You have a voice, so let’s hear it!

In a recent blog post by New York Times’ Tara Parker-Pope, PsychCentral highlights “The 12 Most Annoying Habits of Therapists.”  Launched a year ago this week, our very own Mood community has more than 1,300 patients using “Individual Therapy” as a treatment for their condition.  We asked them to tell us some of the habits they find most annoying and elaborate on the ones outlined by Parker-Pope.  Here’s what they had to say about some of those respect issues:

• I had a [therapist] fall asleep during the session!  I walked out (without paying of course).
• My biggest peeve is with therapists who refuse to work in conjunction with my psychiatrist and his diagnosis.
• I hate it when therapists talk down to me. I’m crazy, not stupid!
• [Therapists:]  Don’t look at patients as if they’re wacky or as if they’ve just said something wacky.  We are always reading faces and reactions, the last person we need to be judged by is our therapist.  Be mindful of how “tuned in” we are to your body language.
• I love my current therapist, but…he once took a call in the middle of a session, obviously from a friend or family member (nothing critical), it had to do with whether or not they should order pizza…I don’t know if he was trying to get me to react or what, but with low self-esteem already, his disregard for my time and his placing more importance on ordering a pizza than on helping me really made me angry and hurt.
• I spent 30+ years in the business world, so things like consistent lateness, taking private phone calls on my time, clock watching and snacking while in session are all things one would never do when with a business client.  Perhaps therapists should take a few business courses.

On the flip side, many of our members (those with depression, anxiety, bipolar, OCD, PTSD) had some positive things to share about their therapy experiences.  Here are a few of those comments:

• My doctor’s advice: ‘don’t let go of the things you enjoy doing.’  I decided to fight for those things–reading, creativity, enjoying the outdoors, animals, writing with fountain pens, hats, etc.–because they’re part of what makes me ‘me.’  I think it was great advice and should be passed on to other people.
• [My therapist] is flexible about what kind of therapy works for me from week to week.  She has a lot of resources to recommend, and when one isn’t my thing, we try another. This goes along with flexibility, but it also shows that she knows her stuff. She has helped me find everything from relaxation tapes to yoga classes to PTSD workbooks.
• My therapist won’t let me get away with anything. I think this is a very good trait in a therapist. She also believes I know my own body better than anyone else.
• She is never shy about throwing me a compliment. In fact she has told me several times that she admires certain qualities about myself.

Got some experiences to share?  We’d love to hear ‘em!  Leave a comment below.

A year ago today, PatientsLikeMe launched our combined Mood community for patients with depression, anxiety, bipolar, obesessive-compulsive disorder and post-traumatic stress disorder.  It was first announced to the world in Thomas Goetz’s article, Practicing Patients, featured in New York Times Magazine.

Since then, more than 8,700 patients have joined the community, sharing detailed information about their symptoms, treatments and overall progress to learn more about themselves and others. Besides specific drug therapies (like Clonazepam or Lamotrigine), did you know many patients cite Listening to Music and Journal Writing as top treatments as well?  Check out what they have to say.

Do you have problems concentrating?  That’s the number one symptom reported by our members.  Other top symptoms include muscle tension, headaches, back pain and stomach pain.

In the coming weeks, we will continue to share some interesting tidbits about the community, including some powerful personal stories straight from our members.  Stay tuned!

Over the weekend, PatientsLikeMe was an exhibitor at the Depression and Bipolar Support Alliance’s 2008 National Conference, which took place September 11-14th in Norfolk, Virginia.  The theme was “The Power of Peers.”

While I spent most of my time at our sponsor table answering questions about PatientsLikeMe, I overheard other attendees discussing a concept I found very interesting. A talk called “I Am Not My Illness: The Importance of First Person Language” by Stephen Propst prompted a lot of discussion from attendees about the distinction and power of saying “I am bipolar” versus “I have bipolar.” He noted that people with other conditions do not say “I am cancer” or “I am diabetes” and that the language we use has the power to change how we think about the intersection of our health and our identity.

As I listened to people hashing out the details and implications of being more thoughtful with our language, I thought more about how it relates to the collective power of peers.  Face to face conversations are a time-tested method for empowering others and making change, but having conversations online can magnify your message far beyond a two person discussion. Having read over 2000 threads in our Mood community in the last 7 months, I know that our members empower one another on a daily basis.  While a single forum thread may have 20 replies, it can be viewed by hundreds of people, escalating the impact of the conversation far beyond its participants. Add to that the ability to see each person’s status from their shared health data profiles, and everyone has the opportunity to learn in multiple ways on PatientsLikeMe.

This single lecture sparked great conversations among the few hundred folks who attended the event, and now the conversation is continuing with our members. Empowering patients through conversations and shared data is producing real change: that’s the power of peers.

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.