The Value of Openness: The PatientsLikeMe Blog

One thing that’s great about working at PatientsLikeMe is that our members are really invested in making our product better. Every day, we receive lots of great recommendations about how to improve the site.   Today, we’re unveiling newly redesigned treatment reports that incorporate feedback we’ve received in all our communities.  Want to know what medications patients like you are using to treat their condition and compare your experiences with others?  That’s what you can do with a treatment report.   In redesigning these reports, we wanted to make them more useful, more visible and easier to navigate.  Now you can:

• Understand the experience of taking a treatment, including what the side-effects are and how people manage those side-effects
• Learn how to cope with taking a drug (with tips and advice from other members and links to relevant forum threads)
• Find and contact other patients like you who use a certain treatment (such as people who report the same side effects or people who take it for the same reason)
• See how your experiences compare to those of other patients like you

If you’d like a tour of these new reports, check out the screencast below by our web developer Adam Darowski.  We’ll continue to update you through the forum, our newsletters and the blog on what’s new and improved on the site.  Your feedback helps us to continue to fulfill our promise of delivering a website that helps you and makes you say “wow.”  Please, keep it coming…

“We the people…have the right to our own health data.”

That’s part of a collective new Declaration of Health Rights, officially unveiled tonight on the newly launched HealthDataRights.org. It is time to turn the conversation from fear and privacy to sharing data and finding new treatments and better care.

The Declaration represents reality that what we are doing does not work and does not serve the patient, and this reality is being declared tonight simultaneously via blogs by all stakeholders in healthcare.  I recently wrote about how sharing is a right.  This Declaration articulates these inalienable rights, as it provides a straightforward definition of health data rights to ensure the flow of meaningful data.  We are that much closer to getting you, the patient, at the center of the health system.

This started with a simple conversation; a conversation about sharing data between two health systems that spurred additional conversation and more.  In the end, so many of us agreed that what we need to do is let the data flow and the information become meaningful. Our collective goal is to ensure that healthcare gets better, quality is improved, and yes, treatments are developed faster.  That is what we stand for and that is what we are working to do.

Below is the Declaration in its entirety.  Read it aloud.  Think about what it means to you.  To us, and the thousands of patients we represent at PatientsLikeMe, this Declaration means that we can truly participate in our own healthcare.  To us, the endorsements of well-known and respected healthcare leaders and organizations for this Declaration signify our nation’s unity in preserving the right to have and share health data.  This is why PatientsLikeMe endorses this Declaration.

Once you’ve read it, know that you, too, can endorse our Declaration of Health Data Rights.  To learn more, go to www.HealthDataRights.org and don’t forget, you have the right.

Declaration of Health Data Rights

In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

•    Have the right to our own health data
•    Have the right to know the source of each health data element
•    Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; If data exist in computable form, they must be made available in that form
•    Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that are participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

So what can you do?  You can endorse it here ; you can endorse it via Twitter (enter #myhealthdata); you can join our  Facebook page and show your support; and perhaps you can even record and share a video reading the Declaration aloud… “I have the right to my own health data.”  Yes, you do.

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.

Despite some recent happenings in the news, we’re here to assure you that health 2.0 is still very much alive.  Here’s our recent announcement about our new partnership with 23andMe.

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PatientsLikeMe, the first community-based personalized medicine platform for people with life-changing conditions, and 23andMe, the world’s leading personal genomics company, announce a partnership today to help people with Parkinson’s disease.  PatientsLikeMe is teaming with 23andMe on its effort to recruit 10,000 people with Parkinson’s for a massive study of the disease, and give patients a way to learn more about their personal genetics.

“Today, technology is moving faster than the research establishment,” says James Heywood, co-founder and chairman of PatientsLikeMe.  “We are excited to see what happens when you give patients the ability to see variations of their disease and compare it to their own, while enabling them to easily define their personal genomics.”

More…

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.

This month marks the 3-year anniversary of our flagship ALS community.  While there have been so many exciting milestones we’ve reached in that time, we’re always looking at ways to bring new insight to this disease.

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.

“Open source software” is created and improved collaboratively, over the web, by the people who need it, even if they work for different companies in different industries on different continents. Similar to our Openness Philosophy, the premise behind open source software is that none of us is as smart as all of us. Software developers that share code help accelerate technical progress, just as we invite patients to share their health information to accelerate research.

(Warning: Technical jargon ahead!)

Here at PatientsLikeMe, almost every software component behind the website is open source. The operating system and web server, database engine, the Ruby on Rails web development framework — if it weren’t for the time and passion that many people have dedicated to these and many other open source projects, PatientsLikeMe might not exist.

It’s time to give some back! We’ve begun to contribute some improvements and innovations we’ve made to the open source community. We recently needed to enhance the open source Ruby gem (a kind of software library) to support some recent changes made by Campaign Monitor, the email service we use to send our monthly newsletters and other large email campaigns. Our contribution has been noted on Campaign Monitor’s website for the benefit of their other customers using the Ruby programming language. Check out our project for more information, including installation instructions.

We’ve also extracted code from PatientsLikeMe that we think others will also find useful, and released a couple of plug-ins for Ruby on Rails, including:

• migration helpers, which adds some convenience to Rails database migrations (simple scripts that help us evolve the database over time)
• multi_field_group_by, which allows you to run a database query and group the results by more than one field for more powerful aggregations

There’s more to come, so watch our GitHub account for updates.

Treatment reporting is a critical part of PatientsLikeMe. Sharing your information lets others see what treatments you’ve tried…and how well they’ve worked. It also gives you a precise record over time to show your doctors.

We’ve had several requests to enhance our treatment reporting tools, and well, we listened. Our top-to-bottom treatment overhaul is officially live, and we are delighted to unveil the major improvements we’ve made. We think you’ll find that not only is it easier to enter treatment information now, but the end result is more useful too.

For a good overview, check out our screencast demonstrating how the new treatment reporting process works. Below are some of the most important changes.

Easier updating
To start, we’ve put all treatment updates on one page. We’ve made it easier to find and add new treatments, see what data has been entered, learn what data is missing and update or add information. Plus, we’ve made it simpler to confirm that your treatments have remained the same - something many members have asked for!

More accurate dosing data
We’ve upgraded our treatment database to include more accurate dosing information. In turn, we use this to help you enter more accurate information.

More comprehensive evaluations
We have made significant enhancements to our treatment evaluations. Our new survey captures information about efficacy, adherence, burden, side effects, unexpected effects, advice/tips and cost, providing a more complete picture of your treatment experience.

Improved treatment reports
We’ve redesigned our Treatment Reports to synthesize all of this new data in an easier-to-understand format. We believe you will find these new Treatment Reports are far more informative than before.

Now that we’ve made these extensive changes, we urge you to take a spin. Review your treatment information. Make any needed updates. If you have been on any treatment for more than six months, provide evaluations. This will make the new Treatment Reports even more valuable for us all.

Thanks for your keen input on this aspect of the site, and please, keep it up. We’d love to hear your feedback about the overhaul!

PatientsLikeMe is proud to be at the forefront of the Health 2.0 movement. What’s Health 2.0 you ask? It’s all about revolutionizing healthcare through new, web-based tools, search functionality and communities. As a result, patients are able to communicate and exchange information in ways they never could before.

No wonder Matthew Holt and Indu Subaiya, organizers of the annual Health 2.0 Conference, list PatientsLikeMe as one of the five most exciting Health 2.0 companies. In a recent interview for the eDrugSearch.com Blog, Matthew said, “[PatientsLikeMe is] the best example of a combination of a really useful community and tools making a significant difference in the lives of people with serious debilitating diseases. You can literally drill down and see people in exactly your situation, on your drugs, and see what did or did not work for them.”

We’re delighted by this recognition, which only bolsters our determination to open the healthcare system further. We know the powerful benefits of sharing treatment and outcome experiences - and pretty soon, the healthcare industry will too!

As 2007 comes to a close, we want to wish everyone a safe and happy holiday season. Thanks for being a part of the PatientsLikeMe family!

In order to continue to create online homes for patients with life-changing conditions, we need to continue building a solid team. Therefore, we plan to expand our staff in the new year, which is why we’ve recently added a “Careers” page on our site. There is currently one active posting for a Senior Application Developer with even more in the works. If you know someone who might be a fit, please let them know about the career opportunities offered at PatientsLikeMe. We essentially look for talented individuals with an interest in helping patients. So we figured, who better to ask for referrals than you!

Again, we wish you all the best of holidays with 2008 being the best year to come.

As you’ve probably noticed, the PatientsLikeMe homepage has had an extreme makeover! The purpose of the redesign was to make our site more personable and inviting. We wanted to put a face on PatientsLikeMe – your face. We also wanted to remove the barriers for those who prefer to take a look around before joining.

The results are already indicating that we made the right call. In the week following the new homepage launch, page views increased a staggering 53%. Needless to say, we are very pleased with how this step has opened the doors to our site. A big thank you to everyone who has converted to a public profile – you’re already making a huge difference!