The Value of Openness: The PatientsLikeMe Blog

Today - June 27, 2009 - is National HIV Testing Day.

AIDS.gov, the one-stop access to U.S. Government HIV/AIDS information and an organization PatientsLikeMe collaborates with to raise awareness of HIV, has been running a campaign all month to promote National HIV Testing Day.  As part of the campaign, AIDS.gov launched the “I Know. I Took the Test” blog series, featuring videos and stories of people talking about what taking an HIV test means to them. The series highlights several HIV testing story campaigns from organizations such as the National Association of People Living with AIDS , POZ , Southern AIDS Living Quilt , The Positive Project , and others.

In support of this campaign, PatientsLikeMe recently invited members of our HIV community to tell us in a few sentences about their experience and/or thoughts about HIV testing.  Here’s what they had to say:

“I think it is probably the single most important thing a person can do for him/herself. The test will show if a person is infected, important knowledge no matter how it turns out.”

“Getting tested for HIV is so important. The knowledge of knowing can make a difference as to how you will live your journey in life.”

“Being tested for me caused me to change my outlook on sex, changed my life in such a way that gives me a opportunity to speak on the importance of being tested , and to share information about treatment, and that there is a life after testing takes place.  If we ever what to see an end to this very serious problem across the world we must continue to speak and encourage testing  in all walks of life.  Moot for me I think not, important to get the word out yes,yes, yes.   Experience is the best teacher.”

“I agree that experience is our best teacher. If you haven’t experienced things how could you give advice?”

“Knowledge is power, knowing your HIV status truly allows you to start living a healthier life, whether you’re are positive or negative.”

Want to know more about how to spread the word on HIV testing? Check out the latest promotions at AIDS.gov and, as always, feel free to share your own experiences there and with PatientsLikeMe.

“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.

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.

Today is an exciting day for PatientsLikeMe.   In a first-of-its-kind industry-patient partnership, PatientsLikeMe is joining forces with biopharma company, UCB, to launch a new community for people with epilepsy to capture real-world experiences of the disease and help advance research.

The news release announcing the partnership is below.

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BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire - June 15, 2009) - Biopharma company UCB and PatientsLikeMe, the leading online community for people with life-changing conditions, today announced a strategic partnership to create an online, open epilepsy community that captures real-world experiences of people living with epilepsy in the U.S.

Scheduled to launch in early 2010, this platform will be designed to collect, analyze and reflect information received from people with epilepsy, regardless of their diagnosis, prognosis or treatment regimen.

More…

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…

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!

Did you know that yesterday was Fibromyalgia Awareness Day?

The PatientsLikeMe Fibromyalgia community is growing exponentially with more than 3400+ members just five months after its launch!  Many  of our members are feeling newly empowered by their membership in our community and are attending events, wearing pins and ribbons and taking the time to spread awareness about what it’s like to live with fibromyalgia.

This sharing mirrors the sharing they do on the site. At PatientsLikeMe, members build their profiles by sharing information about their condition, such as symptoms and treatments.  Top treatments cited to date include rest, heating pads, walking, stretching and the drug Lyrica.  The most commonly listed symptom is pain, followed by fatigue, memory problems and lower back pain.  In addition to sharing health information, patient members also share their personal experiences and tips with each other.  In our forum these past few months, patients have discussed all kinds of topics, including finding the right doctor, coping with pain and fatigue and how to explain how they really feel to their friends and family.

With all this sharing, patients are learning more about themselves, helping each other better understand this condition, and improving their overall quality of life. In fact, in a recent survey amongst some of our members with fibromyalgia, 85% of our respondents agreed or strongly agreed with the statement - “I feel better about myself because of the recognition by others at PatientsLikeMe that my condition is real.”

If you are not already sharing and learning with other patients like you, we invite you to join our community here at PatientsLikeMe.

PatientsLikeMe was once again a proud sponsor of the 15th Annual Parkinson’s Unity Walk, held in New York City on Saturday April 25, 2009. On a gorgeous but hot day in Central Park, Jeana Frost, James Kebinger and I (Maureen Oakes) joined thousands of walkers and sponsors in raising more than $1.2 million for Parkinson’s research. As Lori said last year, “Unity” is the perfect word to describe this event. People from all over the world came together for a common cause and the results were staggering!

Getting to meet PatientsLikeMe members in real life is always a treat, and this year we saw old friends and met some new faces too! For me, one of the highlights was getting to see the amazing quilt made up of squares created by our PD members. Not only is it a stunning piece of craftsmanship, but it represents the spirit of collaboration that is so central to PatientsLikeMe. Members from across the country, many of whom have never met each other, shared their own artistic talents in their individual squares and the final product represents their collective strength, wisdom and passion. It was a great symbol of the power of our PatientsLikeMe community and all their efforts this Parkinson’s Awareness Month.

Great work Team PatientsLikeMe!

When most people think of Parkinson’s disease (PD), they think of a shuffling gait, a shaky hand, and slowness of movement. As awareness has increased of the non-movement symptoms of PD, such as hallucinations and depression, we’ve seen the psychological consequences the disease can have too. More recently, studies in the scientific literature have been reporting on cases of excessive gambling in patients with PD, sometimes associated with the use of dopamine-agonist drugs such as pramipexole (brand name: Mirapex).

In the Parkinson’s disease community on PatientsLikeMe, we came across several accounts from distressed members who had suddenly acquired a significant gambling problem. One member wrote:

“I am spending a lot of money that i should not spend.  I wake up thinking about the lottery, I daily purchase lottery tickets, scratch offs, and often wish that I could get on the bus to go to the casinos… Help me before I spend all of our little savings.”

We set out to investigate further, setting up a research collaboration with Dr. Graeme MacPhee of the Parkinsons Disease Non-Motor Group (PDNMG) and Southern General Hospital (Glasgow, Scotland), who has carried out studies in this area in the past. Although previous studies had associated problem gambling with dopamine-agonist drugs, we wanted to find out if gambling might be elevated in other patients with a neurodegenerative movement disorder; maybe gambling was just an outlet for boredom or something that someone with physical disabilities could take pleasure in as a hobby. Therefore, we used a control group from our ALS community. Because users of our site are, by definition, web users, we were also interested to see if our users were more likely to be using online gambling websites than other reports in the literature. Finally, we wanted to know more about what was driving patients’ gambling behavior.

Because of the size and levels of engagement in our patient communities, we were able to receive responses from more than 400 patients in about a week. Normally, a study of this size would take several years and a team of researchers to carry out, showing the potential power of sharing and openness.

What did we find?

• We found a higher level of problem gambling in our PD population (as defined by the South Oaks Gambling Scale) than previous studies; 13% of PD patients as opposed to previous estimates of around 4%.
• Patients with ALS were much less likely to gamble; only 3% of ALS patients scored above cutoff for having a gambling problem, compared to estimated rates of 0.25-1.7% in the general population.
• The average “problem gambler” with PD had spent nearly $3,000 on gambling in the past 12 months, and an estimated $24,000 in their lifetime.
• The most common forms of gambling behavior were the lottery, slot machines, or visiting a casino. Gambling online using the internet was uncommon; only 2% of PD patients reported ever having gambled online, and just 2 out of 27 problem gamblers with PD.
• PD patient with problem gambling were more likely than ALS patients with problem gambling to say that their gambling was distressing or out of their control.
• In our study, problem gamblers with PD were no more likely than non-gamblers to be on a dopamine-agonist drug.

We were interested to find that our study produced a higher estimate of problem gambling in PD than previous studies. It could be that our population is biased or unusual in some way; we have a slightly higher proportion of young-onset PD patients, who may be more prone to gambling. We also suspect that people are more willing to admit to distressing or embarrassing behavior issues in an anonymous online survey as opposed to discussing it in the doctor’s office.

As more of these cases have come to light, warnings about compulsive behavior have appeared on the label of dopamine-agonist drugs such as Mirapex.  It is the responsibility of everyone involved in the care of people with PD to warn them of the risks. The more patients like those in our community share their real-world experiences of treatments and side effects, the more researchers, drug-makers, doctors, and other providers can learn to help minimize the risks and maximize their quality of life.

Wicks P, MacPhee G (In press) Pathological Gambling amongst Parkinson’s Disease and ALS patients in an online community (PatientsLikeMe.com), Movement Disorders Read the rest of this entry »

It’s Parkinson’s Awareness Month. As we continue to spread the word about this condition, we wanted to tell you a little bit more about our PatientsLikeMe Parkinson’s community. Launched two years ago this month, the community has steadily grown to include more than 3,400 patients. Below are some interesting facts about the community, as well as an interview with one of our members (”PokieToo”) giving her real-world experience of living with condition.

WHAT’S IT LIKE LIVING WITH PARKINSON’S DISEASE (PD)?
Meet PokieToo.  A long-time member of our PD community, she tells us how she continues to “look for the sunshine” while “taking 30 pills a day.”   “Out there for the next person,” PokieToo gives us a glimpse of the real-world experiences of living with Parkinson’s disease.

DID YOU ALSO KNOW…

• More than 1,500 of our patient members are 50-yrs old or older
• 140+ of our patient members have inherited Parkinson’s disease (PD), and a handful of people have the less common drug-induced Parkinsonism and Vascular Parkinsonism
• Approximately 10% of our patient members (or 331) are Young-Onset Parkinson’s patients; that is, they report having experienced their first symptom before the age of 40.

How are our members treating their condition?

• Patients are using more than 1200 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, life-style modifications, therapies, etc.
• The top lifestyle modification reported by our patients is physical exercise;  and walking is the #1 exercise cited.
• The most widely used prescription drugs reported by members are Carbidopa-Levodopa (Sinemet), Pramipexole (Mirapex) and Rasagiline (Azilect)
• Top 3 supplements: CoQ10 Coenzyme Q10, Multivitamins and Omega 3 Fish Oil

What are their major symptoms?

• For more than 1,300 patient members, a “tremor” was their first symptom of the condition.
• The 5 most common primary symptoms reported include: Stiffness/Spasticity, Slowness, Fatigue, Excessive daytime sleepiness (somnolence) and Insomnia.

What are they talking about?

• Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Sinemet, Mirapex, Deep Brain Stimulation/DBS and Exercise), symptoms like tremors and depression, as well as other hot issues like SSDI (Social Security Disability Insurance), the annual Parkinson’s Unity Walk, stem cells, clinical trials and research.

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.

Sharing.  It’s a concept we all learn at a very young age.  Oftentimes reminisced as happening in the sandbox, we think back to our young selves giving up what we hold most dear (in this case, some cheap plastic toy) to allow someone else to benefit from it.  It seems so simple and obvious, but how many toddlers do you know that immediately give into the concept…easily handing over that toy without a moment of hesitation or a slight tug back or possibly the more extreme screaming tantrum?   Over time, what happens is that the more they share, the more they see it puts a smile on their friends’ face, or gives them something in common to “chat” about.

You don’t need to be clairvoyant to see where I’m going with this.  Sharing is at the core of PatientsLikeMe, and it’s what makes our communities so special.  More than 32,000 patients are online sharing something they hold dear — details about their health — so that others can see it, learn from it, and dialogue about it.  It’s truly inspirational and something we believe is transforming healthcare as we know it.

But sharing doesn’t have to stop there.  From a marketing perspective, one of the most widely used and successful viral tactics is the “Share This” button.  You see it everywhere online - blogs, news articles, videos, and more.  We just recently implemented it across our site, so patients can “Share This” treatment or symptom report, press releases, research findings, etc.  It’s an easy way to pass that “toy” across the cyber-sandbox to others who might learn or benefit from it.

It’s nice every once in a while to think back to what we learned as kids and figure out a way to incorporate those values into our adult lives.  Sharing is just one of those things.

So you weren’t the type to share your toys?  Feel like you share too much?  Comments are welcome below.