33 posts by Paul Wicks

Subjects no more: what happens when trial participants realize they hold the power in clinical trials?

Posted February 18th, 2014 by

When I first became involved with online communities back in 2002, I moderated a small forum for patients with ALS/MND in the UK at King’s College Hospital to connect with one another, share tips and support, and to help our care center to serve them better. One area that remains controversial even to this day is clinical trials. ALS is a rapidly fatal and incurable illness, and as a young researcher I was often trying to field questions that patients had about the trials process:

“Why aren’t there more trials taking place?”

“Why do we have to have a placebo?”

“If researchers think commonly available treatments like dietary supplements or antibiotics might slow my disease, why can’t I just take them anyway rather than being enrolled in a trial?”

Given the severity of their situation and the slow pace of clinical trials (it’s estimated that it takes over 10 years for a new discovery to go from the lab to the clinic), I certainly sympathized with their frustrations and did my best to get the answers they needed, asking my medical colleagues where I could and translating the technical jargon. A few patients decided to go a step further than challenging the status quo, however, and took actions into their own hands. One patient taking part in a trial sent her medication off to a private lab to test whether or not she was on placebo, and several others took off-label experimental ALS treatments like creatine or minocycline. Some of them even went abroad to China for highly controversial stem cell treatments. In the end, none of these interventions were shown to slow the disease, but it certainly showed what was possible when a smart, dedicated, and adventurous group of patients could organize online.

Fast-forward more than ten years and we see a very different world, where patients have a growing voice in treatment approval, the design of patient reported outcome measures, and increasingly share their trial experiences through social media. That’s what inspired us to write our latest article just published in the British Medical Journal which details our experiences with how members of our community have replicated a clinical trial, have started sharing their data with leading researchers to debunk alternative “cures” for their disease, and have even started taking trials into their own hands. We feel these are symptoms of a greater underlying problem that has been with the design of clinical trials from the start – trials are all take and no give.

Patients take all the risk with their health, their time, their bodies, and in return they are supposed to temporarily suspend their instinctual curiosity to know more about their health status through self-monitoring or to interact with other patients who might be in a trial, all for the good of science and other patients. Modern technology up-ends that power dynamic though, and now it’s almost as easy for a patient to measure their health status with patient-reported outcomes, wearable devices, or even lab tests as it is for their doctor. In that case, can we really say patients are truly blinded anymore? The double-blind placebo-controlled randomized controlled trial is a “gold standard” in medicine, but unless it adapts to the changing realities of the patient empowerment landscape, it will be inherently unsustainable.

That’s why our team is embarking on research this year to gain a new understanding of what patients want from trials and a new understanding of the social contract as patients want it written. Our hope is that we can bring them together with the scientific needs of researchers to conduct robust science. It won’t be easy, and it might not be popular with everyone, but it’s the best path we can see towards faster cures that respects the rights of patients to be partners, not just subjects.

PatientsLikeMe member PaulWicks


Information Wants to Be Free

Posted February 22nd, 2012 by

This Editorial by our R&D Director, Paul Wicks, PhD, Was Published in the Scientific Journal Clinical Investigation.  Click to Read the Full Article.

(This post has been repurposed from an article written by PatientsLikeMe’s Paul Wicks for the scientific journal Clinical Investigation.)

But when it comes to clinical trials, can we afford to let it be?

“Information (or data) wants to be free” – so goes the mantra of hackers and data activists. In the past this meant computer geeks hacking into secure private networks to fulfill their own curiosity or liberate secret knowledge. Today, voluntary “data liberation,” as practiced by governments and corporations, is relatively commonplace and semiorganized groups with data freedom agendas, such as Wikileaks and Anonymous, have entered the mainstream consciousness.

For me, it feels increasingly challenging to delineate the margins where free data is good or bad. A highly networked, mobile-enabled popular uprising is considered a “revolution” when it’s against an oppressive regime, but considered a “menace” when it is a disenfranchised mob rioting in a western democracy. Bravely recorded videos of civilians attacked by autocratic regime military forces are essential in prosecuting crimes against humanity, but videos leaked from within a democratic military are a “threat to national security.” So while data itself may want to be free, we don’t always want it to be. And so, to clinical trials.

The Clinical Trials Search Feature at PatientsLikeMe

From a societal perspective, the requirement for any trials conducted in the USA to register on ClinicalTrials.gov can only be a good thing in preventing past sins, such as suppressing negative trials or changing end points. As the US government makes this data open, it also allows repurposing. For instance, PatientsLikeMe imports the complete dataset from ClinicalTrials.gov every night to let our membership know (free of charge) about the 30,000+ active trials for which they may be eligible. So far, so good. But what if even more clinical trial data were free?

Read the rest of R&D Director Paul Wicks’ editorial in Clinical Investigation here.

PatientsLikeMe member pwicks


PatientsLikeMe at the NHS Innovations Expo

Posted March 21st, 2011 by

expo2011_logo-straplineIf you’ve ever tuned in to one of our podcasts or had a chance to view one of our videos, there’s a certain characteristic you might have noticed about me.  I’m British.  Very British indeed. During the course of my academic research career, I spent 6 years working alongside neurologists, psychiatrists, and a multidisciplinary team of nurses, speech and language therapists, physios, and occupational therapists at King’s College Hospital and the Maudsley Psychiatric Hospital in South London.  As you probably know, the United Kingdom (UK) has a very different health system to the United States (U.S.). The National Health Service (NHS), formed in 1948 as part of post-war reconstruction, has three core principles:  1) To meet the needs of everyone, 2) to be free at the point of delivery, and 3) to be based on clinical need rather than ability to pay.  Against an aging population and rising medical costs, however, the NHS needs to continually innovate in order to remain cost effective, and the UK’s coalition government has set an ambitious target to maintain quality of care while cutting £20 billion from the NHS budget (approximately $32 billion).

Earlier this month, PatientsLikeMe was invited to participate in the NHS’ second Innovations Expo in East London, a 2-day expo featuring a vast exhibit hall of innovations from the private and public sectors, as well as a packed schedule of seminars and platform presentations from Andrew Lansley (Secretary of State for Health) and Sir David Nicholson (Chief Executive of the NHS).  They spoke of plans for radical reform of the NHS, with more power being transferred from central government to General Practitioners (GPs, equivalent to U.S. Primary Care Physicians, PCPs) and much more of an emphasis on something that ties in with our core value: “Patients First.”

We were fortunate to have a “Masterclass Theatre,” where, on behalf of PatientsLikeMe, I was able to share some of our experiences in the U.S. and provide examples of successes we’ve had that might translate well to the NHS.  We also gave a couple of more intimate seminars which candidly discussed 5 lessons we had learned from 100,000 patients over the past five years.

In addition to PatientsLikeMe, there were a number of interesting innovations at the event, including a company that does what we do but for doctors (Doctors.net.uk), a patient health record that links into the NHS’ medical notes system and allows clinicians to help manage patients with rare conditions (PatientsKnowBest, founded by a doctor and chronic condition patient), and an information portal that helps provides clinicians with the best evidence to help support their decision making (NHS Evidence). We also attended the launch of an inspiring white paper from thinktank The Young Foundation entitled “Connect: Patients and the Power of Data.”  Sensible, compelling, and highly readable, the report starts off with a quote from the coalition government’s white paper on health that we might just make into a plaque: “Information is a health and care service in its own right: it must be freely available to all those who need it.” You can read the report for free here.

For PatientsLikeMe, the UK and the NHS in particular offers a number of interesting possibilities. Because there is less variability in access to care in the UK than the U.S., it might make a better environment in which to evaluate how much benefit our system can have for patients with serious health conditions.  The UK also has a strong medical science community and some of the brightest minds with whom to collaborate on research studies (see, for instance, our work with Oxford University).  Finally, the UK is an interesting place for us to operate because the system is more aligned to prioritize patient care over profitability; that’s not to say it’s flawless or that cost is not a factor in rationing access to some services. But if the current round of proposed reforms are implemented, it seems that physicians and care providers are going to be evaluated and rewarded on the basis of the outcomes they produce for patients, not just the number of procedures they perform. That sounds just like the world we’d like everyone to live in.

PatientsLikeMe member pwicks


Patient Choices: The Shape of Sharing

Posted February 22nd, 2011 by

In these days of Facebook and Twitter, the media is abuzz with news of “over sharing” of sensitive, personal or trivial information – everything from your current location to what you were up to over the weekend.  Members on our site may choose to share some of this, but what about some of the less trivial things in life, like your health information?  Is there such a thing as “over sharing?”  And what about your old “networks,” the ones that are now referred to as your “In Real Life” (IRL) relationships?  How much sharing do you do with them?

For anyone with a life-changing condition, the choices you make in telling (or not telling) others about your diagnosis are a big deal.  There can be both benefits and risks to openly discussing your condition, whether it’s on a website, at work or amongst friends.  To find out more, we conducted a poll amongst 3,858 patients with 10 different conditions, including ALS/PLS/PMA (N=429), Multiple Sclerosis (N=436), Parkinson’s Disease (N=580), HIV (N=137), Mood Conditions (N=513), Fibromyalgia (N=1,031), Chronic Fatigue Syndrome / ME (N=129), Epilepsy (N=347), and Organ Transplants (N=256).

How openly have you shared your diagnosis with various people in your life?  This was the focus of the poll.  We asked you to answer this question across seven different networks, including your immediate family, extended family, neighbors, work/school peers, friends from childhood, current circle of friends, and friends/followers on social networking sites such as Facebook and Twitter.  We then asked you how many of those people you’ve told (i.e., all of them, most of them, about half of them, a few of them, none of them, or does not apply to me).

chart04b

The figure above shows you the response from almost 4,000 patients and gives you a sense of the “shape” of sharing in each disease.  Each column represents your personal network (e.g., family); the colorful lines represent your condition (e.g., ALS); and the height of the line represents the mean degree of sharing within a network (e.g., all of them).  So, do you see the lines close to the bottom of the chart?  Those indicate that very few people in those patients’ networks have been told about their diagnosis.

So, what did we find?  First, the most obvious finding is that you are most likely to share your diagnosis with all of your close family (81%), followed by your current circle of friends (51%) and extended family (43%). From there, you’d most likely tell your peers from work or school (29%), your “friends” or followers on social networks (22%), your neighbors (19%), and finally your friends from childhood (16%).  When it comes to your childhood friends and neighbors, the results reveal that you are much more selective about who you choose to tell.  In these categories, the majority (52%) of you indicate that you have told either “a few of them” or “none of them.”

Two conditions (HIV and Mood Conditions) are the least well known among all networks.  For instance, overall results suggest that within a patient’s immediate family, 81% say “all of them” know about the diagnosis.  However, in HIV, this figure is only 50%, and in Mood it’s 56%.  The effect is even more pronounced with weaker social ties, such as neighbors; overall, 19% of respondents said that all of their neighbors knew their diagnosis; the same number was 4% in HIV and only 2% in Mood.

We didn’t only analyze the results by condition.  What about age?  We found that older patients were more likely to have told their neighbors or people at work/ school than younger patients.

Perhaps the richest data (still to be analyzed) is the open-text responses that we received about some of the positive and negative experiences you’ve had as a result of sharing their diagnosis. A positive example from a patient with ALS read:

“I was devastated and overwhelmed initially, but after reading reports of other ALS patients on PatientsLikeMe, I realized I was not in this alone and their comments were so encouraging.  They encouraged me to share with others and share the triumphs/and bad days.”

A patient with HIV shared some of the risks behind making the choice to be open:

“There is still a massive stigma that goes with HIV. Disclosing can be incredibly difficult when it comes to who to tell and when. Too many still have major misconceptions about the disease and what it means for both the person that has the disease and the people around them.”

Thank you to everyone who took a few minutes to take our poll.  Tomorrow, we’re going to look at what you said about how PatientsLikeMe has affected your openness.

PatientsLikeMe member pwicks


How Patients Like You Use Your Treatments in the Real World (Cont’d)

Posted February 1st, 2011 by

Here is our second blog about the two recent studies published in the Journal of Medical Internet Research (JMIR) about how patients like you are actually using your treatments.

Study Two:  Treatment Adherence Barriers

Your doctor has likely told you that it’s best to take your medication as prescribed.  But in the real world, there are barriers that can prevent you from doing so.  How do you reduce those barriers so that your medication has optimal results?  That was the focus of our second JMIR study entitled “Use of an Online Community to Develop Patient-Reported Outcome Instruments: The Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ).”

This investigation was carried out with our partner Novartis, and it addresses a problem that many of you in our MS Community have struggled with over the years:  the barriers to being adherent to your injected or infused disease-modifying therapies (DMT). By combining a review of the scientific literature with a systematic search through MS forum conversations, we first worked to identify the full spectrum of issues that stop patients like you from taking your treatments on time as prescribed by your neurologist.

Then, we used this information to construct a rating scale called the MS Treatment Adherence Questionnaire (MSTAQ), which MS patients like you can use to quantify how many doses you’ve missed in the previous 28 days and identify and measure the barriers that kept you from being fully adherent.  You can download a copy of the MSTAQ here.

study2
Significant differences in missed dose ratio for patients who reported missing a

dose in the past 28 days; 0.00 = fully adherent, 1.00 = missed every prescribed dose

The scientific literature was already well aware of issues such as forgetting to take a single dose or taking a “drug holiday” to avoid side effects, but the comments of patients like you in our MS forum highlighted some other significant influences. For instance, you have been sharing tips and tricks with one another for minimizing injection site reactions (e.g. using ice cubes), so we added a new section to the scale that asks you how many coping strategies you’ve used.

In doing so, we discovered that your score on the MSTAQ was positively correlated with how many doses of your treatment you missed that month.  But intriguingly, the number of coping strategies you used was negatively correlated.  In other words, the more coping strategies you use, the better you are at being adherent to your treatment.  By publishing these findings in an open-access journal and sharing this rating scale with the research community, we hope to help patients like you understand what’s driving your adherence in partnership with your physician.

As always, we are grateful to you, our fantastic patients, as your sharing makes these discoveries possible.  Your data (and even your words in the forum) are truly advancing the field of medicine and empowering other patients like you to live their best lives.

PatientsLikeMe member pwicks


How Patients Like You Use Your Treatments in the Real World: Two New Studies

Posted January 31st, 2011 by

Ever wonder how many patients like you are using drugs off-label?  Or how hard is it to take MS medications as prescribed?  You’re about to find out.

In January, the PatientsLikeMe R&D team published not one but two studies in the Journal of Medical Internet Research (JMIR) in an effort to provide answers about how patients like you are actually using your treatments.  We’ll highlight both studies here on the blog today and tomorrow.  (Note: Because JMIR is an open-access journal, the articles are free for you or anyone to read in full, without fees or subscriptions or a library card.)

Study One:  Off-Label Drug Usage

Our first study looked at the rates of off-label drug usage in our communities.  What do I mean by “off-label”?  When a drug is approved by the FDA (or outside of the US, by other regulators such as the EMEA), it is “indicated” for the treatment of a specific condition, which permits the manufacturer to market it to doctors who treat that condition and patients diagnosed with it.  This indication is described on the medication’s label.

Any physician may choose to prescribe a treatment for a purpose that has not been indicated, however.  This is known as “off-label” use.  Manufacturers are not allowed to promote such use, though, and because most research focuses on new drug development, there are few systematic ways to discover how common off-label drug use is or to quantify its effects.  Yet at PatientsLikeMe, thousands of patients like you are sharing data on this very practice.  So, the R&D team decided to take a closer look.

This led to our JMIR study entitled “Patient-reported Outcomes as a Source of Evidence in Off-Label Prescribing: Analysis of Data From PatientsLikeMe” (which I am proud to report was the winner of the inaugural Medicine 2.0 award).  We started by identifying two widely used drugs to study:  amitriptyline (a tricyclic antidepressant indicated for the treatment of depression) and modafinil (a wakefulness-promoting drug indicated for the treatment of narcolepsy).  Then, we examined how patients like you were using them used across five condition-based PatientsLikeMe communities: MS, fibromyalgia/chronic fatigue syndrome, ALS, mood disorders (depression, bipolar disorder, and anxiety disorders) and Parkinson’s disease.rd1

Our data revealed that less than 1% of almost 2,000 patients taking modafinil and only 9% of nearly 1,400 taking amitriptyline are taking each drug for its approved indication.  That means the vast majority of you are taking these drugs “off-label.” You also reported higher perceived efficacy for off-label uses than for approved indications, surprisingly. Another interesting discovery is that many of you cited what are normally considered the side effects of amitriptyline (e.g. dry mouth) as your purpose for taking the drug (e.g. to treat excessive saliva).

If researchers are only looking at clinical trial data, they’re missing the whole story because they don’t know what’s being prescribed off-label. To be clear, off-label prescribing is commonplace and standard practice in many conditions, with safety and efficacy established by clinicians’ experience rather than formal studies. However, whenever we can improve upon the status quo by unlocking a new data source (such as what you share via our site), we should seek to maximize that information.

Up next tomorrow…how you’ve helped develop patient-reported outcome instruments.

PatientsLikeMe member pwicks


Share Your Data to Untangle ALS!

Posted January 24th, 2011 by

Our ALS Community recently broke the 5,000-member mark, making it the largest of its kind in the world as well as the ideal platform for expedited research.  And that’s just what we’re working on.

Since the community’s launch in 2006, we’ve conducted a number of research studies, both internally and in collaboration with leaders in the field.  The goal is to turn up the answers that patients like you are seeking.  For example, can lithium slow the progression of ALS?  Or does limb dominance (aka “handedness”) correlate with ALS symptom onset?  Check out the findings from our patient-led Lithium and ALS Study as well as our work with the University of Oxford on handedness.

We also like to think of the dynamic, up-to-the-minute reports on our site, such as our treatment reports and symptom reports, as another form of “research.”   Every day, patients just like you contribute to these reports by sharing your real-world data, including what symptoms you’re experiencing, how you’re treating your condition and how well your treatments are working for you.

alsuNow, the data you share is helping even more people.  Through an exciting new partnership with ALS Untangled (ALSU), we are helping to take the data you share straight to the scientific literature – and at record speed.  ALSU is an international consortium of clinicians and researchers seeking to investigate alternative and off-label therapies for ALS using the Internet, namely Twitter, Ning and PatientsLikeMe.  Through these modern methods, they aim to provide “timely, accurate and scientifically valid analysis of alternative and off-label therapies.”

As they wrote in their mission statement, there are three phases to their cutting-edge approach:

  1. In the learning phase, they use their Twitter feed (@ALSUntangled) to collect ideas for potential therapies to investigate from patients just like you.  (Got something you want investigated?  Suggest it today!)
  2. Then, in the discussion phase, they import these targeted therapies into a closed Ning group and gather information on them from the consortium, including PatientsLikeMe.
  3. Finally, in the public release phase, they publish their findings as open-access articles in the prestigious journal Amyotrophic Lateral Sclerosis.  That means patients like you, caregivers, clinicians and researchers all over the world can read these reports in entirety for free.

Our first collaboration with ALSU focused on the use of Low Dose Naltrexone (LDN) for ALS.  The consortium analyzed data from the 31 members of PatientsLikeMe taking LDN to determine if there was evidence of benefit.  What did they find?  Efficacy data shared by these 31 ALS patients suggested that most did not notice any benefit, and side effects included headaches, nausea and diarrhea.  On this basis, along with a review of the literature, ALSU concluded that it does not recommend LDN for ALS patients at this time.  Read the full LDN study here.

Going forward, we hope that you will continue to share your evaluations of alternative and off-label treatments for ALS so that they can inform the world’s top researchers.  We’re thrilled that your data is being taken seriously by the wider medical community, and we encourage you to participate fully in this novel research project.

PatientsLikeMe member pwicks


Share and Compare: A PatientsLikeMe Year in Review (Part III – more R&D)

Posted January 5th, 2011 by

The research team is very proud of how our team has grown in 2010 and the impact we’ve made in the academic community.  In 2010 alone, PatientsLikeMe and our work were mentioned in scientific literature more than 133 times.  All of this is because of what you share with us.

Yesterday, we highlighted some of the research work we’ve done in 2010 across our four newest communities.  Today, we’ll highlight our older communities.  Below is also a highlights reel of some of this work.

HIV

  • Throughout 2010, we discussed the goal and benefits to measuring your quality of life (QoL). This concept of measuring QoL started in our HIV Community at the end of 2009. Earlier this year in a blog and podcast, Researcher Michael Massagli Ph.D. discussed some of the insights that are being shared by HIV patients through the QoL survey. For instance, we found that the average physical, mental and social well-being score of patients with a CD4 count below 200 is significantly lower than for those of you with a count above 200.

Parkinson’s Disease

  • The Parkinson’s Community has always excelled in reporting their health status through the Parkinson’s Disease Rating Scale (or PDRS). When answering the questions on this scale, members often asked us: “Should I respond when my drugs are working and I’m at my best (‘On’) or when my drugs aren’t working and I’m at my worst (‘Off’)?” Back in October, we released a brand new feature in the PD community that allows you to rate your symptoms as either “On,” “Off”, or in both conditions so now you can see the effect of your medications for yourself.

Multiple Sclerosis

  • We hear a lot from you about the difficulty of adhering to medication. Early last year, our research team developed a new rating scale for patients with MS to assess the difficulties of sticking to their medication. We presented findings at the Consortium of Multiple Sclerosis Centers (CMSC), the main North American conference for MS specialist physicians, nurses, and researchers. The team is currently working on publishing these findings.

ALS

  • Co-founder Jamie Heywood discussed our research into lithium in ALS at the TEDMED conference late in 2009. In early 2010, TEDMED released the video of his presentation where he shares our vision of the future of medicine. The team is currently working on publishing the lithium findings.
  • PatientsLikeMe, in collaboration with researchers at Oxford University, discovered that when ALS patients get symptoms in their arms first, they’re most likely to get it in their dominant hand. This research was presented at the ALS MND Symposium and cited on this MND Research blog.
  • We also collaborated with the Northeast ALS Consortium (NEALS) to examine the decision-making process that patients with ALS go through when considering whether or not to take part in research studies; this was published in the peer-reviewed journal Amyotrophic Lateral Sclerosis.

Here’s a short video highlighting much of the research you’ve helped us do in 2010.

Finally, I want to recognize how our team has expanded this year to better focus on what matters to you most.  Some new additions include:

  • Brant Chee, Ph.D. – a specialist in natural language processing and detecting drug safety data in patient reported text
  • Kate Slawsky, MPH – an outcomes researcher helping to develop custom surveys for our partners and our platform
  • Shivani Bhargava – a research assistant supporting the team in ensuring our platform holds high-quality data about our patients

Thank you all for having a voice in research. There’s so much being learned from what you are sharing every day, and we are excited about what 2011 will bring.

PatientsLikeMe member pwicks


Share and Compare: A PatientsLikeMe Year in Review (Part II – R&D)

Posted January 4th, 2011 by

rd1The PatientsLikeMe research and development (R&D) team is excited about what we can all share and learn in 2011.  Here’s a look back at some of what patients like you shared with us, and what we then shared with the world, in 2010.

The R&D team published and presented some unprecedented insights based on what you shared with us this year.  In addition to attending and presenting at some noteworthy conferences in 2010, we also published a series of blogs and podcasts pulled together just for you.

Based on your feedback, the R&D team also implemented some changes to the medical architecture that will help improve the research we do, as well as your experience as a patient on the site.  Ultimately, we are working to develop tools that help you answer the question: “Given my status, what is the best outcome I can hope to achieve and how do I get there?”

Today and tomorrow, we’ll be highlighting some of the work we’ve done in 2010 focused on various communities.  Today, we start with the following (listed from newest to oldest community):

Organ Transplants

  • Researcher Catherine Brownstein MPH, Ph.D. presented a poster at the American Society of Nephrology (ASN) Renal Week in Denver. We compared the profile of our Transplants Community to published data from the UNOS/OPTN databases and found that about half of our patients knew about the exact degree of tissue matching they had with their donor. We found the fewest mismatches in organs that had come from deceased, rather than living donors. We also found that within the living donors the closest matches came from siblings, followed by parents, children, and then any other relative.

Epilepsy

  • In December, the team attended the annual American Epilepsy Society (AES) conference and presented a poster comparing our data to the Pharmetrics insurance claims database. We found that our Epilepsy Community is a little more likely to be female, more likely to be in their 20s-40s, and that they are more likely to be taking multiple anti-epileptic drugs than the broader epilepsy population. Exploring the biases in our data set and being transparent about them is one of our core values as a science team.
  • PatientsLikeMe is running an ongoing patient-reported outcomes (PRO) study with UCB to measure the physical, social and mental well-being of people with epilepsy over time. By the end of 2010, members of our Epilepsy Community had completed more than 1,300 PRO surveys. Thanks to all of you who contributed.

Fibromyalgia

  • The R&D team recently blogged about a report comparing our Fibromyalgia Community to the wider fibromyalgia population and revealed we are now able to declare with confidence that our community very closely matches the fibromyalgia community at large.
  • In 2010, we published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR). The study, conducted across several of our communities, established a link between sharing health data and benefits experienced on our site. The fibromyalgia-specific findings were that 21% of fibromyalgia members of our site strongly agreed or agreed that they had changed physicians as a result of using PatientsLikeMe, higher than the rate in MS (15%), mood (10%), Parkinson’s (9%), HIV (8%), or ALS (6%).
  • In response to popular demand for more research in fibromyalgia, the R&D team has also started reaching out to members of the scientific community to design research studies to take place in early 2011.

Mood

  • Looking again at the JMIR study specifically within the Mood Community, we found 26% of users agreed or strongly agreed that using the site had reduced thoughts about self harm; 23% agreed they had decided to start therapy or counseling after interacting with others on the site; and 22% agreed they needed less inpatient care as a result of using PatientsLikeMe.  Here’s a video where I present some of these results, and give a walk-through of the Mood Community, at the UMASS Medical School’s Psychiatry Grand Rounds this year.
  • We also recently introduced a new tool in all of our communities called “InstantMe” to help you put your experiences in context.  Based on the feedback we received from members of our mood community about the pilot tool (called “InstantMood”), it is now available for everybody.
  • In response to popular demand for more research in mood, the R&D team has also started reaching out to members of the scientific community to design research studies to take place in early 2011.

More highlights, including a video, coming tomorrow.

PatientsLikeMe member pwicks


PatientsLikeMe at the American Epilepsy Society Meeting 2010

Posted December 20th, 2010 by

AES 2010 boothEarlier this month, PatientsLikeMe was fortunate enough to attend the 64th Annual Meeting of the American Epilepsy Society in San Antonio, Texas. We were there to spread the word about PatientsLikeMe to some 4,000 attendees including epileptologists (physicians specializing in the treatment of epilepsy), neurologists, nurses, and researchers. We had a great spot on the booth of our partner UCB, which featured a large display for us to show the site to conference delegates and answer any questions they might have. Some of the typical questions we got were:

  • “Is this free for patients to use?”   Answer: yes!
  • “How do patients record their seizures?”  Answer: they can very quickly and easily enter both the frequency and severity of each kind of seizure they had during the week
  • “Can I send you some patients?”  Answer: definitely!
  • “What kind of research can you do with the site?”  Answer: stay tuned…

We were also there to present a poster comparing our data to another large data set, the Pharmetrics insurance claims database. Now, we know reading about statistics isn’t the most thrilling of subjects, but the idea was to answer another important question we hear all the time: “How biased is your community?” Biases are important because they affect the quality of the research you can do and the conclusions you can draw from your findings. In our case, an early comparison of our data against a claims database suggests that our community members are more likely than the wider epilepsy population to be:  i) female, ii) in their 30s-40s (more people tend to experience their first seizure either in infancy or old age), and iii) on multiple medications to treat their seizures (“polytherapy”). We want to be transparent about understanding our biases and sharing them with the world, so you can click on the poster below to see the exact findings we presented.

aes2010-poster-thumbnail1

The conference was also a great opportunity to meet other leaders in the online epilepsy space, such as our friends at CURE Epilepsy.org, Epilepsy.com, Seizuretracker.com, and to meet with researchers from an exciting online project called the “Managing Epilepsy Well Network.” In many ways epilepsy is leading the way in online resources and we hope next year we might even convene a special meeting for us all to share ideas on the best ways to help this important patient community.

Our last opportunity to spread the word about epilepsy fell upon our Chairman and Co-Founder Jamie Heywood.  He spoke to some of today’s leading epilepsy doctors in the world about how we can help patients answer the question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”

PatientsLikeMe member pwicks PatientsLikeMe member AMGraham


Share and Compare: How are you feeling? Find out with InstantMe!

Posted December 1st, 2010 by

Here at PatientsLikeMe we strive to give you the tools and functionalities you want and need to gain insights into your conditions, including putting your experiences in context.  Today, we’re introducing a new tool in all of our communities called “InstantMe.”  screen-shot-2010-12-01-at-91856-am1Want to chart how you’re feeling day in and day out?  Now you can.

All you need to do for InstantMe is answer this simple question – How are you feeling now?  You can answer this question as many times in a day or week as you’d like. InstantMe will appear on your profile to add more context to the other experiences you share there, as well as on your Doctor Visit Sheets so you can communicate more effectively about how treatment changes have impacted the whole you.  You can even sign up for a reminder and answer InstantMe right over email.

Why InstantMe?  Many of you already use the measurement tools we have in place to put your experiences in context  – for example, there’s the mood map, quality of life scale, or clinical rating scales (e.g., ALS functional rating scale). These instruments (which you typically fill out weekly or monthly) measure the severity and impact of medical conditions on your life.  But what about all the fluctuations that all of us experience day-to-day or even throughout one day? Maybe they’re due to our health, our treatments, or perhaps something totally unrelated, like holiday planning or work.

For a couple of years, mood community members have been using a tool called “InstantMood.”  They answer one simple question (“How would you rate your mood right now?”) and then choose an answer (“Very good,” “Good,” “Neutral,” “Bad,” or “Very bad.”)  Members can even add a short note (140 characters) to each rating to remind them what was happening at that time. It’s a popular functionality and helps members put context around changes in their overall condition.  Here are some trends members can watch with InstantMood:

Instant mood trends by day of the week Instant mood trends by time of day

What we’ve seen and heard from the Mood community is that this ability to “instantly” rate how they’re feeling is useful at both the individual and community level.  As a user, you give a little something and get instant feedback.  We like that concept.  In fact, you’ll be hearing a lot more about it in the blogs to follow this week, so stay tuned.

With this in mind, we’re excited to roll out InstantMe for all of our communities (thanks in part to what we learned from Mood).  Because we know there are more things that can influence how you feel than mood alone and we believe it’s important to have measurements that get at your whole well-being, we have changed the question slightly.

It’s a simple question, but probably one of the most important ones to ask you.  So tell us – How are you feeling now?

PatientsLikeMe member pwicks


Personalized Medicine: Making It All About You

Posted July 29th, 2010 by

pmtopbannerEarlier this year, the University of Arizona hosted a unique meeting for scientists, policy makers, and law experts to explore the legal, ethical, and policy implications of personalized medicine. The opening keynote was by Dr. Lee Hartwell, 2001 Nobel Prize recipient in Medicine / Physiology and Director of the Fred Hutchinson Cancer Research Center and he invited the audience to consider the role of patients in research. He stated that there was an “increasingly important role for patients in this process” and that scientists currently “rely on trial data, totally insufficient to the problem.”  Dr. Hartwell also stated that “when you talk to patients, they want to make a contribution. They would like their medical info made useful to other people. The only thing that keeps them from doing so is the threat of losing their life insurance or losing their job.” The views of pioneers such as Dr. Hartwell are important in medicine and it was energizing to hear such a well regarded figure espousing a philosophy with which we so strongly agree.

The lunchtime speaker was David Ewing Duncan, a journalist whose recent book “Experimental Man” detailed his journey to try and undergo every medical test available to science (including genetics, brain scans, and lab measures) in order to find out more about his health risks and how to live the best life possible. As the cost of genetic sequencing comes down to the mythical “$1,000 genome,” we may one day all take the same journey as Duncan to explore how much of our health outcomes are determined by data accessible to us right now. There will undoubtedly be ethical and moral conundrums along the way as genetic science moves from the specialist clinic to all of us as consumers, but ultimately understanding your own DNA is as much of a right as being able to look in the mirror.

Moving from genotype to phenotype, I gave a presentation in the afternoon about our work at PatientsLikeMe.  More specifically, I focused on how our platform allow patients with serious medical conditions to find out where they stand in the context of other patients like them, and how systems like ours might one day be able to help guide them to the most effective treatments to improve their outcomes.  Highlights from my presentation are now on our YouTube page.

PatientsLikeMe member pwicks


Multiple Sclerosis: Sustaining Care, Seeking a Cure

Posted July 15th, 2010 by

cmsc-logoOur research team here at PatientsLikeMe carries out world-class research in collaboration with academic centers, commercial partners (see “how we make money“), and to help answer questions from our patients. We share our findings with the world through this blog, peer-reviewed publications, and by attending academic conferences like the Consortium of Multiple Sclerosis Centers (CMSC) annual conference. This meeting, now in its 24th year, is for neurologists, nurses, researchers, and other healthcare professionals involved in MS to share their knowledge, network, and form new research collaborations.

In collaboration with our partners at Novartis, our MS community recently participated in a research study exploring the reasons why people don’t always take their disease-modifying therapies as prescribed. Adherence to medication is a big issue in chronic conditions; although we all mean to take our meds as prescribed by physicians, good intentions can fall by the wayside when real life interferes with our plans! Decreased adherence could lead to less medication efficacy, more relapses, and a higher burden of disability for MS patients.

By exploring the messages posted in our vibrant MS forum, and carrying out a review of the scientific literature, we constructed a new questionnaire called the “MS Treatment Evaluation Questionnaire” (MS-TEQ) that sought to explore and quantify the barriers that get in the way of people taking their DMTs as prescribed. As part of the validation process we also showed the questionnaire to some local MS patients to ensure it was easy to understand. In December of 2009, we sent out an invitation to 1,209 carefully selected patients and asked them to complete the MS-TEQ. Within just two weeks, we had complete responses back from 442 patients, a 37% overall response rate.

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The MS-TEQ addresses three areas: 1) MS-TEQ Barriers: the barriers faced by patients that stop them from taking their meds as prescribed (e.g., forgetting), 2) MS-TEQ SEs:  the side effects they experience (e.g., injection site reactions), and 3) MS-TEQ Cope: coping strategies they use to try and cope with these side effects (e.g., using an ice cube to reduce pain and itching). Our analysis found that for every 10 points on the MS-TEQ Barriers scale, patients did not take 10% of their medication as prescribed. However, we also found cause for hope; every coping mechanism they used to try and ameliorate their DMT side effects had a positive effect of 4% on the proportion of their DMTs that they took as prescribed.

At the conference’s poster session, we got a lot of interest from attendees and gave away all of our handouts and copies of the questionnaire, so you might be seeing the MS-TEQ in a clinic near you any day now! Our hope is that the questionnaire will help patients and their healthcare providers to understand why someone is struggling to take their medication as prescribed, and to give them a way of measuring this over time. We are currently preparing a manuscript to submit to a peer-reviewed journal to share our findings with the rest of the academic community.

Do you have trouble taking your MS disease-modifying therapies as prescribed? Check out our treatment database. Thousands of our members have written evaluations of the drugs used in MS, including advice and tips on how to stay adherent to your medication to improve your outcomes.

PatientsLikeMe member pwicks


It’s Official: Sharing Health Data Improves Outcomes

Posted June 21st, 2010 by

(Listen here to the PatientsLikeMeOnCallTM podcast on this topic)

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Last week the PatientsLikeMe R&D team published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR), the leading open access peer-reviewed journal on health care in the Internet age. The study aimed to find out direct from our users how they were using the site and whether the information they’d learned was helping to influence their interactions with healthcare providers, their decision-making, and ultimately their outcomes. Because JMIR is an open-access journal, you can download the whole paper for free here, but here are some of the highlights from the 1,323 patients that completed the survey:

  • Almost all of our patients (94%, N=1,249) were diagnosed when they joined the site; an important factor in joining a community of “patients like me”
  • The majority of members (72%, N=952) agreed that the site was helpful for learning about a symptom they have experienced (check out our symptom reports to see what they’re learning!)
  • Many respondents (57%, N=757) agreed that the site had helped them to understand side effects of their treatments (check out our treatment reports to find out more!) and 42% (N=559) found the site helpful in finding another patient with experience of taking a specific treatment for their condition
  • Patients who used the site more perceived more benefits. We gave each patient an “engagement score” from 0-4 based on how many features of the site they’d used; we found that the higher the participation, the higher the benefit. Correlation doesn’t necessarily mean causation though, so it could be patients who share more get more out of it, or it could be that patients who have already benefited from the site are more willing to participate. Interesting hypothesis for a follow-up perhaps?
  • Nearly a third of patients (29%, N=388) had printed out their profiles and shared them with their doctor; two thirds of users (66%, N=871) said their healthcare team were supportive of them using the site. More controversially, we were interested to find that overall, 12% (N=151) said they had changed their physician as a direct result of information received from PatientsLikeMe; that number was twice as high in fibromyalgia (21%)!
  • In the spirit of openness we also made available (in de-identified form) all of the open comments we received at the end of the survey on how we could improve the site, both positive and negative.

This was the first study to quantify the potential benefits that users of the site can experience; we hope to discover more about how these change over time and what benefits are perceived by users of our newer communities such as epilepsy and organ transplants.

PatientsLikeMe member pwicks