Julia’s piece includes details regarding how this incident happened, how we (and you) responded and more. We are very excited about this article. Having a rigorous debate about transparency, openness and privacy is critical to us achieving the trust we want to have with you, our patients.
What Nielsen did was clearly a violation of our User Agreement. However, we believe this incident (and this article) have spurred an important ongoing discussion about what is right, just and appropriate regarding how companies operate in this new networked world. As I said to Julia, this is a new frontier. We also believe there’s a lot for everyone to learn from this experience, especially around how to put patients first.
“This represents my family, we share everything together.”
- PokieToo, PatientsLikeMe Parkinson’s Community
“The Patient Voice” is here! Are you ready to listen in? Today is the official premiere of our new PatientsLikeMeOnCallTM podcast, “The Patient Voice.” Our first guest is Parkinson’s community member, PokieToo. Pokie is the founder and creator of the PatientsLikeMe Parkinson’s quilt, a handmade and inspiring piece of patchwork pulled together by members all over the world. A valuable member of the PatientsLikeMe community, Pokie is recognized in the greater Parkison’s community as a leader and advocate. She has worked a lot with various nonprofits, including as a consultant for the Parkinson’s Disease Foundation Parkinson’s Quilt Project, and she’s the captain of our members’ Team PatientsLikeMe at the Parkinson’s Disease Unity Walk every year.
As you’ll learn from hearing from other members throughout this series, everyone knows her and loves her. Pokie is truly an inspiration to everyone she meets. Listen in to learn about how the PatientsLikeMe PD quilt was created, how it’s being used to empower other patients, and why she calls PatientsLikeMe her family.
On Thursday October 7, 2010, the PatientsLikeMeOnCall TM podcast is proud to present a new series called “The Patient Voice.” Through these podcasts, you’ll hear emotional and inspiring stories from our community members that demonstrate the type of sharing and positive connections being made by patients on our site and how these connections are affecting their lives.
For the first run in the series, we’ll be focusing on the PatientsLikeMe Parkinson’s community and hearing from members about a very special handmade quilt. A few years ago, members of this community came together online and decided to create the quilt as a fun activity to get them through the winter season. Each patch of the quilt is designed by a different member of the community and demonstrates, in a very personal way, something about the individual and her/his experience living with Parkinson’s disease. Initially a fun passion project, the quilt has become an expression of the power of community. Little did the quilters know how much their project would end up impacting their lives, the lives of other members, and, even beyond that, the lives of people in the Parkinson’s disease community as a whole. This quilt has traveled all over the world; it’s been featured in countless news publications spotlighting our members and their work with Parkinson’s disease; it was spotlighted by the Dartmouth Hitchcock Medical Center in their Health Living & Learning conference brochure; and it was, in part, the inspiration for the Parkinson’s Quilt Project being pulled together by the National Parkinson’s Foundation.
In this five part series, we will be talking to some of the members who contributed patches to the quilt as well as other people who have been touched by the quilt. To get you geared up for this series, here is a quick clip from our interview with PD community member, BrownCat.
The premiere launches this Thursday (October 7th) at 2pm EST with an interview with PokieToo, and the other interviews will run every Tuesday following. To listen to the series, you can subscribe to our iTunes page or you can find our podcasts on our PodBean page. Get ready to be moved by “The Patient Voice”…
Share your thoughts in an innovative online event
with our partner Myelin Repair Foundation.
Our Openness Philosophy is centered around the idea that patients sharing their real world health data allows for collaboration on a global scale; that it will accelerate new treatments; and that it can change our health care system. In this same spirit of openness, The Myelin Repair Foundation (MRF) has recently announced a new collaborative event.
This fall MRF is inviting scientists, industry experts, patients, policy makers, and other big thinkers inside and outside of the medical research enterprise and health care industry to two online “idea sourcing” events called “Breakthroughs to Cures”. These events are designed to explore creative ways to accelerate the pace of medical research and shorten the time to market for new medicines for all diseases.
The two events will take place respectively on October 7-8 and November 9-10 and there will be as many as 600 individuals from a wide range of backgrounds in online conversation threads that are expected to identify new strategies for accelerating research. Here is a chance for patients to come to the table, contribute your ideas, your experiences with illness, and your sense of urgency to the discussion. If you’d like to learn more and register for the events, visit “Breakthroughs to Cures”.
At PatientsLikeMe, we believe that real world data sharing helps drive research, helps patients make treatment decisions, and improves patient relationship with doctors. The results from our user survey indicate that many members of PatientsLikeMe agree the site has helped them to understand side effects of their treatments and has helped them find another patient with experience of taking a specific treatment for their condition. In fact, 65% of patients feel they are more involved in treatment decisions because of what they learned on PatientsLikeMe.
We believe, given this power, patients have the ability to affect a huge change in the medical system. Make your voice heard by participating in one or both of these unique online events.
It’s your data, your ideas, your experience, your future - share on.
The following message was sent this morning to all members of PatientsLikeMe. Please read what we have to say about openness, sharing and its privacy implications and join the conversation.
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Dear PatientsLikeMe Members,
What are the privacy implications of sharing in this open, online community? We talk a lot about this and, as a company, strive to be transparent about the risks and rewards to sharing here. Two recent events have prompted me to reach out to all the members of PatientsLikeMe to ensure we all understand openness, sharing and its privacy implications.
The first event happened last month when a patient asked us to remove all the data on his/her profile from the system. The member wrote:
“The reason I’m leaving is I feel I didn’t fully understand the privacy impact of having all my health information for practically anyone in the world to see.”
We rarely receive a request like this, but since receiving this one, I have thought about it every day. We do not want anyone to be surprised by the impact of sharing data on PatientsLikeMe. We believe in openness, but we also want people to knowingly make the choice to be open with their health information.
This brings me to the second event. Recently, we suspended a user who registered as a patient in the Mood community. This user was not a patient, but rather a computer program that scrapes (i.e. reads and stores) forum information. Our system, which alerts us when an account has looked at too many posts or too many patient profiles within a specified time interval, detected the user. We have verified the account was linked to a major media monitoring company, and we have since sent a cease and desist letter to its executives.
While this was not a security breach, it was a clear violation of our User Agreement (which expressly forbids this type of activity) and, more significantly, a violation of the community’s trust. Your Account Information (e.g. your names and emails) was NOT in danger of being stolen. It is likely that the forum information that was “scraped” would be sold as part of that company’s Internet monitoring product. In fact, we sell a similar service, PatientsLikeMeListenTM, to our clients so they better understand the voice of the patient.
What does this all mean to you? What can you do?
We recognize that people write very personal things in the forum and often use real names. In any growing network of tens of thousands of members, there is no way to ensure that information you share in the forum or on your profiles will not be read by others. Know that the information you enter in our system is shared (unless we tell you it is private, like full name and email in your Account Information). It can and will be read by other patients, the PatientsLikeMe team, researchers, and others that use PatientsLikeMe, including our partners with whom we share de-identified data.
Please weigh the benefits of sharing and the amazing value you all create in helping each other versus the risks of people, unknown to you, reading your posts. Your input helps PatientsLikeMe and our partners learn about your disease and make better products to meet your needs.
Learn and understand why we value openness. If you haven’t, please read the Read This! FAQ. If you want to know how we make money, you can take a look at this FAQ or go to our Partners Page and know that we sell your data and insights (but not your identity) to our customers.
Consider the value of being part of the PatientsLikeMe community and make the right risk decisions for yourself. Together, we can really change the way diseases are treated and managed by putting you, the patients, in the center of healthcare. We can hold companies accountable for the strengths and weaknesses of their products and also help make those products better - but that requires openness and that is your choice.
We welcome your comments and questions and we love feedback. This has been posted on our blog, which is a good place to dialogue, as is the forum.
On behalf of the entire PatientsLikeMe team, I want to thank you for being part of our communities and sharing your experiences.
Sincerely, Ben Heywood
President and Co-founder, PatientsLikeMe
In honor of the week, and March being National MS Awareness Month, we will be posting interviews with MS patients and nonprofit partners on the blog each week to help raise awareness about real-world experiences with the condition and initiatives that are keeping the research going. Today, is our interview with gardener, one of our very active patient members who joined the community back in 2007 just after it launched. She recently answered some questions from Amy Morton, a member of our marketing team here at PatientsLikeMe, about life, living with MS and being a member of PatientsLikeMe.
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(Amy) What’s on your mind these days?
(Gardener) Right now, at this moment, my cats, because they’re begging for food, and being very loud and persistent.
In general, I’ve been focusing on violin and accordion performances coming up in April. I’m playing dance solos. It should be fun. That, and figuring out something to make as a demo for this month’s sewing group. I went over two years of having something new at every meeting until October of last year, then got whacked by a bout of depression.
It’s lifting, and things are fun again. My friends aren’t annoying anymore, either. Come to think of it, everyone was kind of annoying during the worst of it. At the time, I told a friend I wanted to curl up in the bottom of my closet. She suggested bringing along a fluffy blanket and a pillow. That wasn’t an annoying suggestion.
(Amy) What do you enjoy most about winter?
(Gardener) Watching my dog play in the snow. He likes the deep fluffy snow we’ve gotten recently and shows such joy running through it. The lower temperature is nice, too, as is meeting people for whom this is their first real winter. Seeing others enjoy things like snowball fights so much gives me a better outlook on winter. I have never been good at throwing, so I just watch.
(Amy) How do you keep perspective with your condition?
(Gardener) For a long time, I’ve tried to keep in mind that the only constant is change. That outlook helped a lot when I was diagnosed. This is no one’s fault, it’s not a lesson, and it didn’t happen for a reason. MS is a random thing. It’s hard to take random things personally. Also, I’ve had friends go through refugee situations. After hearing their stories, it’s hard to think of this as more than an inconvenience. Yes, MS sucks, but there are many things that are worse.
(Amy) Share why you decided to make your profile public.
(Gardener) Something that I’ve found frustrating in general is how few things people really discuss. By having the profiles open, you can see what others are taking for symptoms, and how they like the treatments. You can also see what kind of results people are getting with what they’re doing. It would be hypocritical to use a resource like that and not return the favor. Also, PatientsLikeMe feels like a safe place to share.
Posted by Lori Piscatelli Scanlon | February 17, 2010
In March 2008, a story by Thomas Goetz appeared in the New York Times magazine about PatientsLikeMe (”Practicing Patients”). Thomas has now expanded on that reporting with a new book, The Decision Tree, that explores how new tools like PatientsLikeMe can help individuals engage in their health and make better, more informed choices. We asked Thomas some questions about his book.
(PatientsLikeMe) What inspiration did you take from PatientsLikeMe? What did you want to say in a book that you didn’t say in the magazine story?
(Goetz) When I wrote the story two years ago, PatientsLikeMe was a much smaller community - just 7,000 members, compared to more than 50,000 today. But it was already clearly a phenomenon: the members were engaged in their health in unprecedented ways. In reporting the story, I realized that what’s going on at PatientsLikeMe is part of a larger phenomenon: new technologies like the Internet that let individuals use their health data. At PatientsLikeMe, this is happening among people with particular health concerns, from ALS to mood. But the same ideas are spreading to preventive health and diagnostic health, and my book is an attempt to capture the entire phenomenon and opportunity here.
(PatientsLikeMe) Are PatientsLikeMe members unique? Do you have to be an information junkie to delve into your health data, or is this something that anybody can engage in?
(Goetz) I spoke to several PatientsLikeMe members for my story and even more for my book. They are literally on the first page and all the way through to the last chapter. For a writer, PatientsLikeMe members are exemplary patients - engaged, articulate, and passionate about PatientsLikeMe. And yes, PatientsLikeMe members are unique, insofar as they are on the vanguard of healthcare. They have tapped into something that the rest of the U.S. and the world is just realizing: that it can be incredibly powerful and healthful to get granular with our health information and - even more importantly - to share that information with others, to use it to build new insights. But they’re not unique, I don’t think, in the sense of being all that different from the rest of us. I think they’ve hit on something that can work for vastly larger population. More people need ways to engage with their health data and to turn it into inspiration.
(PatientsLikeMe) What do you hope comes out of the book? Who do you hope reads it?
(Goetz) At this point, I’ve spent several years talking to people who have heard the gospel of engaged patients and collective wisdom. PatientsLikeMe and the other companies in the book have created something remarkable - ways to get people involved in their health - and to those in-the-know, it starts to seem like common sense. Of course giving people a way to engage in and share their data is a road to better health!But in truth, this is still very much the exception in the healthcare world. The rest of the world hasn’t heard the good word - they are still in the old paradigm where the patient is something to fix rather than someone to engage. My hope is that, just as PatientsLikeMe has spread from a mere 7,000 members to the 50,000 today, so the broader message of patient engagement is a contagious, even viral, philosophy. I truly believe that the message in the book - that when people have a way to engage in their health, they can have better health - is something that can truly improve the lives of many, many people.
(PatientsLikeMe) Can you share something you learned in writing the book?
(Goetz) Among the many things that I hope PatientsLikeMe members would enjoy learning about in the book, one thing stands out: the story of the Health Seekers. It turns out that in 19th century America, an important part of the pioneering westward expansion was driven by patients - specifically people with tuberculosis, seeking better health. These health seekers were exceptional, especially at the time, because they broke away from the way they were told to deal with their disease, which was basically to do as little as possible and waste away. The Health Seekers rejected this idea and decided that they would not only take charge of their health, but that they would forge a new direction for the country. In many ways, I see the Health Seekers as the ancestors of the PatientsLikeMe community - people who are taking charge of their health and building something new. And in the case of PatientsLikeMe, they are building something that will help thousands of others, something that gets more powerful with every new contribution and entry.I’m proud to have PatientsLikeMe in my book, and I’m incredibly grateful to the PatientsLikeMe members who agreed to share their story not just with their PatientsLikeMe brethren but with the general public. My hope is that their stories will help lead other people to better health.
Posted by Lori Piscatelli Scanlon | December 31, 2009
As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year. Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months. Wishing you all a Happy New Year!
Community Milestones
This year, the 15+ disease communities at PatientsLikeMe became an online home to more than 50,000 members. The fibromyalgia community was expanded this past fall to include patients with chronic fatigue syndrome, and we announced a new community scheduled to launch early next year for people with epilepsy. In addition to celebrating our communities’ awareness days and months within the site and right here on the blog (including Fibromyalgia Awareness Day, MS and PD Awareness Months, National HIV Testing Day and World AIDS Day), many of our members also participated on PatientsLikeMe teams in walk/run efforts to raise awareness and money in the name of their disease. Congrats to the 40+teams walking at events to support non-profit organizations like ALS Association, National MS Society, NAMI, Parkinson’s Alliance, APDA, and the MS Society of Canada. The real-time sharing and learning happening on PatientsLikeMe was also highlighted in the report series called The Patient Voice (starting with inpatient therapy for people with Mood conditions). Check out highlights from all these programs on these videos from the Fibromyalgia, Parkinson’s, Multiple Sclerosis and Mood communities.
“I find this site so beneficial in looking for the tools to cope with the disease. People post research and real-life patient experiences of current trials and treatments. Hope is a major focus of PLM and I encourage others to join. We are strong in numbers and we have a voice.”
“PLM is a wonderful way to express what and how to live with this disease. It has changed my life for the better, have met wonderful individuals and we have shared, cried and grown by reaching out and expressing from our hearts, have made wonderful friends and have learned so much.”
Throughout the year, the team has also shared insights via videos (like this series on the history of ALS or a recap of a study on the antidepressant Amitriptyline) and various presentations (such as an overview of our work at the at Eurordis AGM in Athens and updates on our lithium study at the International ALS/MND Symposium). In addition to working on the development of our new communities, the team took additional steps to incorporate genetics into the PatientsLikeMe platform. By participating in new partner studies (such as 23andMe and NEALS) and utilizing new product upgrades, including the launch of the Genetic Search Engine, patients are learning more about their condition and coming closer to answering the question: “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”
Keep your eyes out for more to come in 2010 as our R&D team rolls out more insights and outcomes measurements (like the Quality of Life scale in HIV), more improvements to the PatientsLikeMe platform, and cutting edge research in the peer-reviewed scientific literature.
The Business Side
As Ben said in a recent blog post, “we can’t have a business without you [the patient] and our communities can’t exist to help patients without a business.” Throughout the year, the PatientsLikeMe executive team traveled around the world to present to industry partners, researchers, healthcare professionals and government leaders about the power of real-world patient data-sharing. Here are some highlights from ‘09:
Government: Piloted in our MS community this year, PatientsLikeMe members now have the ability to voluntarily report adverse events directly to the FDA; in fact, Jamie recently presented about adverse event reporting at an open FDA hearing on the “Promotion of FDA-Regulated Medical Products Using the Internet and Social Media Tools.” PatientsLikeMe was also one of the collaborating organizations responsible for writing the Declaration of Health Data Rights and launching HealthDataRights.org this past June. Finally, Jamie testified before the National Committee for Health and Vital Statistics, and gave an exciting rapid-fire presentation on the future of medicine at the Gov 2.0 Summit.
Innovation: As a leader in Health 2.0, PatientsLikeMe executives are often asked to speak at various industry events. Check out photos of Ben speaking at The National Summit and stay tuned for videos from Jamie’s presentation at TEDMED and David’s presentation at Bil:Pil. You can also tune in to our live event tweets on the PatientsLikeMe Twitter account in 2010.
Media Highlights: PatientLikeMe members, data and executives were also featured in media mentions throughout 2009, including WIRED, Forbes, U.S. News & World Report, Fox Business Live, Newsweek, New York Times, as well as Seed magazine, Nature Biotechnology and Neurology Today.
Posted by Lori Piscatelli Scanlon | November 18, 2009
Every so often, we sit down to try and make our business objectives clearer to our patient communities. Why? Well, we can’t have a business without you and our communities can’t exist to help patients without a business.
This often results in our Privacy Policy and User Agreement being updated to help clarify our goals and objectives. One of our company’s core values is transparency, which means we never want to surprise you. Our site wouldn’t be what it is today if we didn’t honor the trust you put in us. Because of that trust and our values, we want you to understand what our Privacy Policy means for you and make sure it clearly states what we’re doing with your information as a business.
So, what has changed about our Privacy Policy? Well, the short answer is not much - but if you haven’t read it in a while, it will read differently (and hopefully much clearer). As you know, we talk very openly about how we encourage our paying customers to partner with our patients (check out our Read This! section) to better serve your needs. The latest changes to the Privacy Policy reflect what we have always intended to do as a business, which we’ve hopefully expressed to you. In this latest revision, we try to make it clearer by providing examples of what different parts of the policy means. We give specific examples of real world cases of where and when your data is used and/or sold.
For example, over the last year we have expanded our efforts into understanding drug safety in the real world. This started with the Treatment Evaluations - letting you tell us (and our customers) what is good and what is bad about the treatments you are taking. Next, we piloted (in our MS community) the ability to voluntarily report adverse events directly to the FDA through PatientsLikeMe. Lastly, in conjunction with UCB, we are expanding our efforts to measure drug safety in the Epilepsy community. All of these initiatives are building to a better understanding of how treatments work in the real world - one of our goals here at PatientsLikeMe.
As we’ve said through our site from the start - you control your information and you “may enter as much or as little information as they like.” We just added “and should not enter any information they feel uncomfortable sharing.” This is common sense on any website, but for new members we wanted to make it clearer. The bottom line - the more you share about your real identity online (whether its on PatientsLikeMe or other Internet sites), the better the chance that someone could identify you.
If you haven’t see our Read This! section, please do. It’ll help give you a sense of what we believe the risks and benefits are to sharing information. Openness is at the core of who we are as a company (see our Openness Philosophy). Your openness is improving patients’ lives, accelerating research and helping improve medical care. Thank you for that. If you have any questions or comments, you know where to find us!
Posted by Lori Piscatelli Scanlon | September 24, 2009
Check out the October issue of WIRED magazine! PatientsLikeMe makes “The Smart List: 12 Shocking Ideas That Will Change the World.” In an interview with Brendan Koerner (”Forget Medical Privacy“), Co-founder Jamie Heywood talks about how “the lack of openness [in medicine] is making us sicker” and how sharing individual health data can benefit you. What do you think?
Earlier this month, Jamie also gave a rapid fire presentation on the future of medicine at the 2009 Gov 2.0 Summit. He addresses how we can better answer this question for patients: “Given my status, what is the best outcome I can achieve and how do I get there?” Here’s how (with openness leading the way):
Primary Lateral Sclerosis (PLS) and Progressive Muscular Atrophy (PMA) are two rare variants of the disease ALS. Normally, ALS affects the upper motor neurons in the brain and spinal cord, as well as the lower motor neurons that send signals from the spinal cord directly to muscles. PLS and PMA are different because PLS only affects the upper motor neurons, and PMA only affects the lower motor neurons. It’s an important distinction for patients to be told about because the prognosis is less severe in these conditions. On average, survival in ALS is typically reported to be 2-5 years, whereas for patients with PMA it’s more like 5-10 years and for PLS it’s even longer (often several decades).
ALS itself is a rare condition, affecting some 30,000 people in the United States at any one time. PLS and PMA each represent approximately 5% of the overall ALS community, so there’s approximately 1,500 patients with each condition in the U.S at any given time. In April 2008, PatientsLikeMe added the ability for members of our ALS community to change their diagnosis to these rare conditions. To date, we now have 182 patients with PLS and 270 with PMA. This is truly exciting because even the largest studies in the literature have only examined 40 or so PLS patients and a similar number of PMA patients. One of our most useful features on our site for people with ALS is the percentile curves, which we display as a backdrop on their profiles to put each individual’s rate of progression into context. However, as you can see in the figure below, when you compare the progression curves of ALS patients on our site with those of a typical PLS patient, the PLS patient progression deviates significantly from the ALS curves.
With so many PLS and PMA patients sharing such valuable information about their disease on PatientsLikeMe, we had enough information to generate a new set of percentile curves for each of those communities. To do this, we used self-report ALSFRS-R (ALS functional rating score - revised) data from 104 PLS patients and 59 PMA patients that met our criteria for data quality. We have good data for the first 4-5 years of disease after onset, and after that point we rely on linear extrapolation to make the plots. Here we see the value of openness in action. When you see the potential value in contributing your data, it drives a virtuous cycle: the more data you enter, the more value you get, so you enter more data!
As any of our patients in these communities will tell you, being diagnosed with a rare disease can be a frustrating experience. Aside from dealing with the condition itself, there’s the lack of public awareness, a lack of research investigating your condition, and a sense that you are being “lumped in” with a similar disease because your community doesn’t have the critical mass to merit its own attention. These new percentile curves for PLS and PMA patients demonstrate the value and power of openness. By sharing their health data in an open fashion, patients are providing new insights that are changing how we think and act when it comes to these very rare conditions.
Note: A potential limitation of these curves is that they represent the outcomes for patients that are members of PatientsLikeMe and may not be generalizable to the entire population; we are working hard to better understand and correct for the biases in our population and data. As the size and longevity of each community increases, we will be in a better position to address these issues.
“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.
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.
Ben Heywood is speaking at The National Summit in Detroit today, and was invited on Fox Business Live to talk about the patient influence on the future of health care. Here is the segment with anchor Alexis Glick.
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.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
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