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 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.
Today, we’re announcing an exciting major upgrade to our PatientsLikeMe platform – new profile charts with significant functional improvements.
We started PatientsLikeMe with the idea that visualizing your condition and treatment history over time is a powerful way to understand the impact of your treatment choices and tell the story of your progress to other patients like you. So, we designed the website with the profile charts as the centerpiece around which the rest of the site activity is organized.
The new profile charts, which we’re rolling out today in the ALS community, are designed to help you understand your own profile better and tell your story more effectively. Ultimately, these charts will help you answer the question: “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”
Here are some of the functionality improvements the members of our ALS community will notice:
Charting of treatment side effects. If you have reported side effects for a treatment (by filling out a treatment evaluation), you can now see them plotted on your profile underneath that treatment.
Charting of treatments taken for a symptom. If you have reported that you are taking a treatment for a particular symptom (by filling out the information in the treatment’s “purpose” section), you will see those treatments on your profile plotted underneath the symptom.
Customizable timescale. It is now easy to see your history over various time spans from 1 month all the way up to the entire history, all at the click of a button.
General visualization clean-up. We made some design improvements to make the charts easier to read, such as the visualization of the treatment dosage changes.
What our members will notice more than any of these improvements is that when you interact with the chart (by zooming, opening/closing charts or side-effects, etc.), the interaction is smooth and instantaneous. This is because we completely overhauled the technical platform we are using to display the charts. We think that this new technology will make it quicker and easier for us to give you even more chart innovations in the future.
(For the technically inclined, the old charts were static images with Ajax mouseovers and timeswitchers, and the new charts use Flash technology. Note: All members must have the necessary Flash component installed to display the charts and, in some cases, a Flash installation upgrade may be necessary).
As with all our pilot programs, we will be testing it out to make sure it’s working well for our members. Once everything is working smoothly, we will roll the charts out to our other communities. But even more exciting, we want to continue to add charting innovations, such as the ability to re-order treatments by purpose (treat my condition, treat a symptom, etc.) or overlay the profiles of other patients just like you.
These new charts are the first of many new exciting upgrades to the PatientsLikeMe platform this year. We add these enhancements because we want to stay true to our core values: putting “Patients First” and making changes that “Create Wow!” We hope you agree.
Do you have feedback on the charts or how we’re doing in general? Please let us know!
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.
Posted by Lori Piscatelli Scanlon | August 13, 2009
With 13,000+ members, the Multiple Sclerosis (MS) community is currently the largest community at PatientsLikeMe. Many of our members are just as active online as they are off. There are a countless number of ways for people to get involved in supporting research for the disease, and many patients choose to participate in the thousands of walks and runs that take place year round. At PatientsLikeMe, our members have a voice in research by sharing data about their condition. However, we also support patients’ decision to take their involvement offline.
Earlier this year, PatientsLikeMe introduced a program to support and sponsor Walk/Run teams. We are encouraged by the success this initiative has already seen since its inception. To date, hundreds of people across all our communities have participated in teams sponsored by PatientsLikeMe, with many of those teams from our MS community.
Want to see some of our patients in action? Head on over to the PatientsLikeMe YouTube page at www.youtube.com/PatientsLikeMeMS and check out some of your fellow patients on the move. All the pictures from the video and more are also in our Facebook photo album, so check them out (and while you’re there don’t forget to friend us either!) Thanks to all who participated in the program and gave us the material for this first video. Keep on walkin’ everyone!
(Special props to our summer intern, Shane, for editing the video and producing the music for it!)
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.
“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.
As we end 2008, more than 10,000 patients in our community are coming together to share their life experiences on PatientsLikeMe. How much experience is that? Try more than 32,000 YEARS of collective experience with MS.
More members than ever are sharing in-depth health information with each other, having repeatedly seen the value that this provides to others (and to themselves). Our forum is where members convene to find support and talk about all sorts of health-related topics, including MS-related treatments. Copaxone, Avonex, Tysabri, Baclofen, Rebif, Betaseron, LDN and 4-AP and others top the list of treatments discussed this year. In addition to our dedicated treatment evaluation reports, several members also use the forum to keep journals of their experiences with specific treatments to better help others understand these meds. There is also a good deal of discussion on dealing with other aspects of MS, such as depression, steroids, family and relationships, etc. To date, the forum has more than 17,000 posts.
Ready to share your experiences with us in 2009? Check us out to see what patients like you are doing to live their best life with MS. Happy New Year!
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!
Posted by David S. Williams III | October 24, 2008
Openness. Privacy. These philosophies stand in direct opposition in the question of which is better for consumer health. Should people be open with their health information or private? Certainly there are times for both, right?
Not according to some privacy advocates. On October 22, 2008, Deven McGraw from the Center for Democracy and Technology cited a survey on their blog entitled “National Dialogue on Health Information Technology and Privacy” that 67% of respondents were either “somewhat” or “very concerned” about the privacy of their personal medical records. A glass half-full perspective would say that one-third of respondents think openness is appropriate, at least somewhat. McGraw summed up the post this way:
Without appropriate protections for privacy and security in the healthcare system, patients will withhold information from the health care providers - or decide not to seek treatment - because of fears about how their personal health information could be misused. Ignoring concerns about privacy - or inadequately address[ing] them - will significantly threaten public trust in these new e-health technologies, and in our overall healthcare system.
It may be a stretch to say make a blanket statement that patients will decide not to seek treatment based on fears about how their information would be used. Let’s hear from patients themselves. We asked members of our Multiple Sclerosis community to respond to this statement in our forum. Here are excerpts from some of their responses:
1. I would withhold info or not seek care due to privacy concerns. I was thrown into MS and was very forthcoming with everyone, including my former employer. If I had to do it all over again, I would keep my mouth shut, with the exception of telling my family. I like the anonymous nature of PLM. I don’t include my full name so I’m comfortable in noting my dx and symptoms.
2. unfortunately, there really isn’t enough privacy anymore. I just figure to heck with it. If they really want my info they’ll find a way to get it anyways.
3. I believe the benefits of participating in a health care system using online records outweigh privacy concerns. What privacy? Given the resources, anyone can find out anything about my background.
4. Like many, I have mixed feelings about this. Working in healthcare, I know that there is a HUGE advantage to having all your medical info readily available to any provider. I can think of many times where I’ve had a patient who couldn’t tell me their history, or what meds they’re taking, and struggling to figure out what was going on. On the other hand, I also know, from personal experience, that having unauthorized people get access to your health info can have major negative consequences.
5. That [online medical records is] inevitable is probable,but I still believe that we should have the right to say who knows what,when,and if about ourselves.Its about freedom of choice,will and about human dignity!
6. My medical records are open, wanna see? Just look at PLM!!!!!
What a popular question! We got dozens of responses in less then 24 hours. What we found is that the one-in-three ratio holds. Of our patient member responses, two out of three have either not sought treatment or wouldn’t seek treatment because of privacy concerns. The other third believes that privacy doesn’t exist or doesn’t help people. Although anecdotal, this is quite a finding and reflects what we believe to be the true nature of this debate: There are times for openness and times for privacy. Patients simply want control over when each is employed.
Do we ultimately know that sharing health information online is “safe”? We answer that question in one of our FAQs, but the short answer is we don’t know. Yes, there are risks that information will be misused. But what we also know is that there is a benefit/risk equation for people and their health. And when research is slow and treatment options are scarce, patients turn to each other for help and support. They can’t wait 10 years or more for traditional clinical research. Sharing becomes the best option. The internet then becomes the most powerful medium to share information, identify new best practices, and ultimately create new medical evidence.
Our Openness Philosophy discusses how sharing health information is actually a way to democratize health data for the benefit of all stakeholders, patients, physicians, researchers, caregivers, and industry as well. We can’t answer the question for you posed in the title. Only you can decide if sharing health information online is for you. We just want to give you the opportunity if and when you’re ready.
We would love to hear what you think! Continue the conversation by leaving us a comment.
PatientsLikeMe was recently one of the sponsors for the 2008 MS Challenge Walk on Cape Cod, a three-day, 50-mile event held on September 5-7, 2008. More than 620 walkers participated, each raising a minimum of $1,500. Overall the event raised close to $1.4 million to benefit Multiple Sclerosis (MS) education, support, advocacy and research.
The walkers persevered through some very nasty weather during parts of the walk. Fortunately, the last day was a spectacular early Fall day in New England, as the event ended with the parade of walkers onto the Hyannis common.
We had the chance to talk to many participants over the course of the three days, and showed them how PatientsLikeMe can help them share their health data and experiences and learn from others. We showed them a public member’s profile to demonstrate how they could use enter treatments, symptoms and outcomes and chart the course of their disease over time. They were also very excited to see how this information is aggregated in our Treatment Reports. Whether they wanted to share their positive experiences with a specific treatment, or were looking for more information about a newly considered treatment, walkers definitely saw great value in our treatment report/evaluation system.
This event is also where our MS quilt made its public debut. The quilt, made up of individual squares created by many of our charter MS members, brings home the support aspects of the site. It highlights some of the people who have helped create and grow the site into one of the largest and most vibrant MS communities online today, with more than 7,600 members from around the world. The process of actually creating the quilt also represents what PatientsLikeMe is about: pulling together patients’ experiences and data in a way that allows both the individual and comprehensive view of the disease.
This was an inspirational event. It was rewarding to learn first-hand from people about the challenges they face dealing with MS, and to offer them a resource where they can find and learn from others going through similar challenges.
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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Multiple Sclerosis, Openness 
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Pain is a common symptom for people with all of the diseases on PatientsLikeMe, and is most prevalent in diseases like 
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 
AGM in Athens
Innovation: As a leader in Health 2.0, PatientsLikeMe executives are often asked to speak at various industry events. Check out 
minimum of $1,500. Overall the event raised close to $1.4 million to benefit Multiple Sclerosis (MS) education, support, advocacy and research.
