Posted by Lori Piscatelli Scanlon | February 24, 2010
PatientsLikeMe partner, Myelin Repair Foundation (MRF), is a nonprofit organization devoted to reducing the time it takes to discover and develop treatments for multiple sclerosis (MS) patients. Recently, the MRF launched a campaign called “Where are the Cures?” - a site dedicated to a greater understanding of the barriers slowing the discovery and development of new patient treatments in all diseases. PatientsLikeMe co-founder Jamie Heywood asked Scott Johnson, President and Founder of MRF, about the campaign.
(Scott) The big idea? Finding a way or ways to accelerate the development of new patient treatments.Developing new medicines or treatments for complex diseases is extraordinarily difficult. But it is not impossible and it should be happening at a faster rate than it has been. I believe the single most rate-limiting factor is the failure to move promising scientific discoveries made in academic laboratories into the commercial development pipeline.The problem is fairly simple. On the front end of the value chain, academic laboratories are spending upwards of $40 billion a year in government and non-profit dollars to make basic scientific discoveries that may be potential drug targets. On the back end, the pharma industry is facing a crisis of grand proportion as a result of its dwindling pipeline. The obvious question is why isn’t pharma reaching into this vast pool of potential drug targets to fill their pipeline? Because between the two is what is known in the industry as the Valley of Death.I think two things primarily contribute to this disconnect. First, most biological discoveries made in academic labs are not patented. Without the clear ownership that patent protection provides, biopharma is unwilling to make a multimillion investment in drug development. Second, there is little to no funding available to conduct the validation studies necessary to fully demonstrate that the basic scientific discoveries made in academic laboratories will truly and safely impact the disease state in humans. Without this validation, again, the perceived risk to pharma is too high.Knowing this, it’s shouldn’t be surprising that so few treatments for difficult diseases are coming to market.So how do we capitalize on the promising discoveries made in universities and feed that pipeline? We address those two problems: protecting the IP and funding validation studies.We are doing this at the Myelin Repair Foundation and it can be done in other medical research. But it requires an open mind and a set of shared incentives that puts the patients’ needs before other current incentives.
(Jamie) As a part of the campaign, you launched The Patient’s Manifesto, a declaration that the medical research system is broken and a call for massive change across industries. Why should a patient with life-changing condition sign it?
(Scott) We created the manifesto because we wanted to bring attention to the problem and provide a venue where new ideas would be talked about. There is a lot of innovation going on in the industry but we have to find ways of sharing it. Why should patients sign the manifesto and encourage others to do the same? On the premise that the squeaky wheel gets oiled first, we think that we will be more successful at bringing public attention to this problem if there appears to be a significant groundswell of people who care. The millions of patients and their families living with chronic diseases are the most motivated to create change. There is no implied promise here. It’s all about building awareness and attracting attention in a way that will spur change.
(Jamie) Both our organizations work to help let the patient voice be heard. What do you think a patient’s role is in making our research system more efficient?
(Scott) I think the entities that are best positioned to tackle the Valley of Death are the non-profit disease research foundations like the MRF. Their only motivation is improving the quality of life for patients. Because we are not driven by academia’s need to “publish or perish” or by pharma’s need to increase shareholder value, we have the freedom to move among and between the players in the value chain and facilitate the process on behalf of patients. It is largely patients and their families who support these non-profit organizations and for their investments they have a right to ask for accountability. While investing in basic research is an absolutely essential part of the equation, it takes more than that to get a drug to market. Patients should be asking the organizations they support how they plan to actually accomplish that once the basic science is completed. I think as patients, we understand that this isn’t easy. But we don’t have to sit back and be satisfied with the status quo.
(Jamie) No we don’t, Scott. Thanks for talking with us about the campaign. For those of you wondering, yes I’ve signed The Patient Manifesto. Have you? Go to www.wherearethecures.org for more information.
We’re big fans of patient-reported outcomes (PROs) here at PatientsLikeMe, defined by the Food & Drug Administration (FDA) as:
“A measurement based on a report that comes directly from the patient about the status of a patient’s health condition without amendment or interpretation of the patient’s response by a clinician or anyone else.”
The self-report questionnaires we use on PatientsLikeMe to measure your health (such as the mood map, ALS-Functional Rating Scale/ALS-FRS, and other rating scales) are all examples of PROs, and they’re designed to accurately reflect the level of disease severity for a particular condition. Contrast PROs with the results of a blood test or an MRI scan; these are measured by someone other than the patient and are interpreted by healthcare providers. When a disease is relatively well understood and can be measured directly, as in HIV, measurement can be performed with objective measures such as blood levels (e.g., CD4 count and viral load). However, for many disease there is no objective measure for a disease (e.g., fibromyalgia). That means that trials and other clinical research studies are dependent entirely on the report of the patient themselves through PRO instruments. The FDA has recently released a new report: “Guidance for Industry: PRO Measures: Use in Medical Product Development to Support Label Claims.” This report provides guidance on the design of new instruments, and evaluation of old instruments, to let scale designers know how to get their PRO taken seriously by the FDA, with a view to making claims on the prescribing label. This report has many positive aspects which we believe will improve the quality of PROs in research. For example:
“Sponsors should provide documented evidence of patient input during instrument development and of the instrument’s performance in the specific application in which it used (i.e., population, condition).”
We’ve always believed strongly that PROs should come directly from the patient’s experience, and we already consult extensively with patients (as well as clinicians and researchers) in the design of each new community. We’ve also done novel research this way, collaborating directly with a group of previously unmeasured ALS patients to ensure their PRO scale was able to reflect their experience with advanced forms of their disease.
“Characteristics of the PRO instruments that are reviewed by the FDA include the following: Number of items… data collection method… administration mode… response options… recall period… respondent burden… translational / cultural adaptation availability.”
These are all important factors in PRO development that are frequently overlooked. For instance, a survey that takes too long to complete will tire patients out and could adversely affect the quality of the data. A survey that depends on a patient being highly literate or wealthy could bias findings and make the tool unusable in the developing world. When patients complete our PROs on the site, there is no healthcare provider nearby they can consult for clarification; we work hard to ensure our questions can be easily understood and are unambiguous.
“We encourage instrument developers to make their instruments and related development history available and accessible publicly.”
Although only “encouraged” and not mandated, this is a step in the right direction. Too often new scales are developed (or old ones modified) without clear justification or transparency. Here at PatientsLikeMe we are planning to embark on our own efforts to validate our existing scales, some of which are widely-used gold standards, others of which we developed in-house. Where possible, we’ll publish our methodology to the scientific community so that others can benefit from what we’ve developed.
“Because statistical significance can sometimes be achieved for small changes in PRO measures that may not be clinically meaningful (i.e., do not indicate treatment benefit), we encourage sponsors to avoid proposing labeling claims based on statistical significance alone.”
This is an important point. If we created a pain scale which went from 0-100 (0=no pain, 100=unbearable pain) and gave it to enough patients in two groups (say, a thousand in each group), then it’s quite likely we could come up with a small but statistically meaningful difference. However, just because it’s statistically significant, is it really worth the cost, the risk of side effects, and the treatment burden to go from 80/100 to 78/100? This part of the guidance reinforces this notion and will encourage investigators to fine-tune their instruments for responsiveness. We’re already examining our existing scales to establish what we call “minimally important differences” (i.e., how much of a change on the scale is really a meaningful change as opposed to random variation in the measure?).
The report also contains (as an appendix) a sort of “how-to” recipe for submitting evidence in support of a PRO. We are fully support this guidance and look forward to the day when PROs developed from data on PatientsLikeMe can be used to support label claims for clinical research.
Posted by Lori Piscatelli Scanlon | February 16, 2010
Today’s news release announcing acquisition of ReliefInsite. Want to receive future announcements? Sign up for our RSS feed on the press page.
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FOR IMMEDIATE RELEASE
PATIENTSLIKEME ACQUIRES ONLINE PAIN MANAGEMENT COMPANY, RELIEFINSITE
20,000 Patients Reporting Moderate to Severe Pain on PatientsLikeMe
Cambridge, MA and New York City, NY - February 16, 2010 - Today, PatientsLikeMe, the leading online community for patients with life-changing diseases, announces the acquisition of ReliefInsite, a pioneering online pain management company.
“Right now, there are more than 20,000 patients on PatientsLikeMe experiencing real pain,” says Ben Heywood, President and Co-founder of PatientsLikeMe. “By acquiring ReliefInsite, we can improve the way we help patients effectively manage their pain.”
Conceived by founder Fred Eberlein in 2000, ReliefInsite’s patented online pain management technology developed into a secure HIPAA-compliant platform designed to help patients monitor their pain levels and share that information directly with their doctors.
“I’ve spent more than a decade inventing and advancing the technology platform at ReliefInsite to help patients manage their pain and improve the patient-doctor relationship,” says Eberlein. “I’m excited this work has led me to my new home at PatientsLikeMe, where we can work together to better align industry’s interests with improving patients’ quality of life.”
ReliefInsite will continue to support its existing pharmaceutical and clinical clients as its functionality is integrated into the PatientsLikeMe platform. Eberlein joins the PatientsLikeMe team to lead the companies’ integration and enhance product offerings for partners in the life sciences industry.
Pain is a common symptom for people with all of the diseases on PatientsLikeMe, and is most prevalent in diseases like fibromyalgia and multiple sclerosis. In the depression community, thousands of patients report they are currently experiencing “back pain” or “stomach pain,” with 50% of those members describing their pain as moderate or severe. Across all of the disease communities, pain is a topic of discussion in more than 61,000 forum posts. Additionally, patients are using hundreds of treatment options to manage their pain from prescription medications, such as Cymbalta and Lyrica, to alternative solutions like acupuncture, massage and physical therapy.
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.
A few weeks ago, I was invited to present on behalf of PatientsLikeMe at the Arthritis Foundation workshop held in Newport, RI. The presentation was on how to “harness new media for patient advocacy” - the same as what I presented at a workshop for non-profits in northern New England in August. This time the audience included non-profits in the southern half of New England. Among those in attendance were representatives from organizations that mean a lot to us, and our patient communities, including regional branches of the American Parkinson’s Disease Association, CFIDS & FM Association, and the Epilepsy Foundation.
One of the highlights for attendees was an impassioned keynote speech by Rep. Patrick Kennedy (pictured above with me and my wife Emma) who advocated the use of the web to support mass organization of patients with serious and chronic illnesses to accelerate research and improve standards of care. We couldn’t agree more. It’s exciting and validating to know influential decision-makers are recognizing the potential of communities like PatientsLikeMe.
Though documented as long ago as the early 1800s, medical breakthroughs in Parkinson’s disease research have been slow in coming. That’s why PatientsLikeMe continues to get involved in the research process. With our new genetics engine for Parkinson’s disease, patients now have a way to share information about their genetics and find others with the same genetics as them. As part of our commitment to supporting genetics discovery, PatientsLikeMe recently partnered with 23andMe, aiding them in their research effort to get 10,000 Parkinson’s patients for a groundbreaking research study.
Most of the time, people don’t know what causes their Parkinson’s disease. It could be due to genetic factors we haven’t identified yet, environmental exposures, or maybe even something else completely. However, there are some known genetic causes of Parkinson’s disease. Sometimes different genetic mutations have different disease characteristics, so there’s some benefit to knowing what mutation you may have. For example, different genetic mutations can result in an earlier or later onset for Parkinson’s disease, some have a milder or more severe disease course, and others have a higher or lower chance of dementia. Knowing your genetic status could help you plan ahead, especially if you have a strong family history of the disease.
The 23andMe kit tests for one genetic mutation that can cause Parkinson’s disease - LRRK2 G2019S. The chances of having this mutation vary with your ethnicity, and not everyone with the mutation will get Parkinson’s disease. However, some studies claim that LRRK2 G2019S is responsible for about 5-6% of all familial cases of Parkinson’s Disease and 1% of sporadic (randomly occurring) cases of Parkinson’s disease.
We are working to include as much meaningful genetics information in the PatientsLikeMe Parkinson’s community so that you can make the best decisions collaboratively. For those PatiensLikeMe Parkinson’s community members taking advantage of the 23andMe offer, we encourage you to upload your genetic information on your PatientsLikeMe profile so we can continue to expand our understanding of genetics and Parkinson’s in the context of individual patients. If you go to your 23andMe account and find that you have the LRRK2 G2019S mutation, you can add it to your PatientsLikeMe diagnosis history. Once you have entered your genetics to your profile, you will be “findable” by other “patients like you” with the same genetics. The PatientsLikeMe research team is excited about learning more about Parkinson’s with your help. Sharing information will help us all learn as much as we can about the disease.
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.”
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.
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).
“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.
Posted by Lori Piscatelli Scanlon | April 19, 2009
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.
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.
Did you know this April is both Parkinson’s Awareness Month and the 2-year anniversary of the PatientsLikeMe Parkinson’s community? We invite you to celebrate with us all month as we share real-world patient insights and experiences of living with this disease…and we ask you to share on!
The PatientsLikeMe Parkinson’s community has come a long way since it launched in April 2007 - topping more than 3,400 patient members in just 24 months. Our community members share so much about themselves on a daily basis - from details about how they manage their condition to their personal experiences and stories. Why share? Simply stated, to learn more about themselves while helping others better understand this condition. In the spirit of awareness and sharing, this month we’ll share with you some of what we’ve learned so far from these inspirational individuals and keep it real with some personal patient stories about living with PD.
Additionally, later this month, PatientsLikeMe is once again sponsoring the Parkinson’s Unity Walk (www.unitywalk.org), “the largest single-day fundraising event for the Parkinson’s community.” The event, which brings together thousands of people touched by Parkinson’s, takes place every spring in New York City’s Central Park. PatientsLikeMe members from all over the U.S. will once again be meeting in New York to walk together as a team. (Check out some of our onsite interviews with PatientsLikeMe members from the 2008 Unity Walk and keep an eye out for 2009 highlights).
Stay tuned for more from us as the month unfolds. Until then, what else is happening this year for PD Awareness Month? Share your events or PD news in the comments below!
PatientsLikeMe believes in the benefits of openly sharing health information. That is why we are happy to spread the word about National Family History Day, which had its fifth anniversary on Thanksgiving 2008.
As families gather this holiday weekend, National Family History Day encourages families to become familiar with the health history of previous generations. At PatientsLikeMe, we encourage everyone to take advantage of the family time to identify, discuss, and make a written record of family health problems. Many health disorders such as ALS, Parkinson’s, Multiple Sclerosis, heart disease, stroke, and diabetes, run in families and across generations. Knowing your family history gives insight into your current health status, and lifestyles and environmental factors that may affect your disease risk.
While there is talk of personalized medicine being on the horizon, collecting and interpreting family history information is a currently available, and practical personalized health tool. Health care professionals can use this valuable information to design individualized care programs to reduce risk of disease and promote overall health.
So while you’re eating that feast and the leftovers this weekend, ask your family about their health history. It’s good conversation and can help everyone. Happy National Family History Day!
Most people think of Parkinson’s disease (PD) as a condition of aging, and most of the time they’re right. Looking at the population as a whole, about 1-2% of people over the age of 65 have PD, and it’s usually a condition that is most severe in patients in their 70’s and 80’s. However, about 10% of patients buck this trend and experience their first symptoms before the age of 40; these patients are known as Young-Onset PD or YOPD for short. The R&D team here at PatientsLikeMe recently carried out a research study examining an aspect of PD that has only recently gained much attention, “non-motor symptoms.” When a clinician diagnoses PD, they are usually looking for a triad of cardinal features, specifically tremor, slowness, and stiffness. However, in the past 5-10 years it has been increasingly clear that patients with PD also experience a number of non-motor symptoms, ranging from dizziness to constipation, from a loss of sense of smell to hallucinations, and from apathy to urinary problems.
Several of our members had mentioned in forum postings that they were finding non-motor symptoms, such as cognitive confusion and fatigue, to be a particular burden, so we decided to carry out a research study using the well-validatedNon-Motor Symptoms Questionnaire (NMS-Quest) developed by Professor Ray Chaudhuri and colleagues. We sent the survey out to all of our PD patients earlier this year. In total, we got responses from 307 patients, including 260 “classic” PD patients and 46 with YOPD. The results show a higher number of non motor symptoms among YOPD patients (14/30) than PD patients (11/30). That’s an average of three more non-motor symptoms for YOPD patients than their older counterparts. More specifically, YOPD patients (at the individual level) report apathy, concentration problems, falls, pains, and sadness more often than older onset PD patients.
It’s unusual enough to have YOPD, which can be an isolating and confusing experience. For YOPD patients to experience even more non-motor symptoms than patients with more typical PD seems alarming, and requires urgent attention from clinicians, researchers, and patient advocacy groups to ensure their needs are being met.
This sentiment is echoed in some of the patient interviews we conducted with members earlier this year. Click here to view the first in a series of interviews to be posted on our YouTube page, and hear for yourself what YOPD patients had to say when we asked what people should know about PD. (More videos to come on our YouTube and Facebook pages, so stay tuned!)
YOPD patients are more likely to still be working, to be supporting families, and to be looking after young children or parents. Therefore, even minor changes in cognitive function or mood could have a substantial impact on their ability to function.
Because YOPD patients are relatively rare and spread out, researchers aren’t often able to gather sufficiently large samples to study them in detail. A research platform like PatientsLikeMe provides an ideal opportunity to collect high quality data in an efficient way.
PatientsLikeMe is the leading online community for people with life-changing conditions. Patients embrace the open sharing of personal health data because they believe that information can change the course of their disease.
With a focus on patients and research, our blog reflects knowledge resulting from the shared real-world experiences of our community. Welcome to the genesis of patient-led research.
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ALS, Chronic Fatigue Syndrome/ME, Epilepsy, Fibromyalgia, HIV/AIDS, Mood Conditions, Multiple Sclerosis, Openness, Parkinson's Disease, Rare Diseases, Research 
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Most of the time, people don’t know what causes their Parkinson’s disease. It could be due to genetic factors we haven’t identified yet, environmental exposures, or maybe even something else completely. However, there are some known genetic causes of Parkinson’s disease. Sometimes different genetic mutations have different disease characteristics, so there’s some benefit to knowing what mutation you may have. For example, different genetic mutations can result in an earlier or later onset for Parkinson’s disease, some have a milder or more severe disease course, and others have a higher or lower chance of dementia. Knowing your genetic status could help you plan ahead, especially if you have a strong family history of the disease.
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.
