159 posts in the category “Research”

Paul Wicks on the power of sharing data

Posted April 5th, 2017 by

Back in December, our VP of innovation, Paul Wicks, Ph.D., spoke at the annual International Symposium on ALS/MND in Dublin. The goal of the annual meeting is to share new understandings of ALS/MND as quickly as possible through collaboration between leading researchers around the world.

Now, we’re sharing a video of his presentation about what you and the ALS community has shared about living with ALS over the last 10 years.

Here’s what Paul had to say:

“We hope this presentation shows the power of patients sharing their data to help shed light on ALS. It’s a disease that can isolate people, rob them of their voice, and sap their strength to fight back, so we’re proud that we’ve been putting the data our members share to good use for over a decade now and we’re keen to share some highlights of what we’ve found.”

What do you think about Paul’s presentation? Share your thoughts in the forum.

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The record on research: Catching up with TOA member Cris

Posted March 15th, 2017 by

Back in January we introduced Cris, a member of the 2016-2017 PatientsLikeMe Team of Advisors living with ALS. She’s also a fierce patient advocate who’s participated in several clinical trials since her diagnosis. We recently caught up with her to learn about her experience with clinical trials and why access and awareness of clinical trials is so important.

Despite her shy personality, Cris got involved with patient advocacy with the encouragement of her ALS specialist, Dr. Richard Bedlack. Determined to overcome her shyness, Cris found motivation and purpose in advocating for future patients, family and friends and the belief that access to all trials should be easily available for a patient and not complicated to locate. In May, she attended the ALS Advocacy Day in Washington D.C., where she represented pALS from North Carolina and shared her own ALS journey with her state’s senators.

Cris believes that clinical trials are critical for survival, present and future, but physicians don’t know about, or take the time to discuss current trials with patients unless their facility is active in research. There are very few active ALS clinical trials and because of stringent trial protocols, many patients are not accepted due to progression of the disease. She believes that since ALS is fatal, drug companies are worried patients might succumb before end of trial.

Since her diagnosis in 2014, Cris has participated in several clinical trials:

  • Started a new trial but ultimately failed in the qualification process.
  • Started a “blind” (placebo vs drug dosage) – but couldn’t tolerate the side effects of the drug dosage and was advised not to continue.
  • Participated in a monitored daily physical activity study.
  • Currently enrolled in the year-long Lunasin Virtual Trial (completing at the end of March 2017). This trial is in partnership with Duke and PatientsLikeMe and all monthly input and results can be viewed by PatientsLikeMe patients.
  • Currently participating in a 6-month study through the Precision Medicine Program (ALSTDI), to compare movement data collected using accelerometers and overlay those data with an individual’s self-reported ALSFRS-R scores. Involves keeping track of progression with activity monitors for six days.

What is the goal of the Duke Lunasin Virtual Trial?

  • The primary hypothesis is that a supplement regimen containing Lunasin can decrease the rate of ALSFRS-S progression by 50% relative to matched historic controls.
  • While it might not be the most delicious drink, Cris makes it work by mixing the Lunasin with juices or smoothies. Cris, like many of her fellow pALS, is willing to go to any length for a treatment or cure.
  • Want to know more about the Duke trial? Check out what Dr. Bedlack had to say.

New to the ALS community? Cris has some words of advice:

Know that it’s okay and expected, when first diagnosed with this disease, to have the wide spectrum of emotions from sadness, madness, confusion, “why me” and fear (to name a few). I highly recommend putting aside all the negativity that goes with this journey as quickly as possible. Regroup, focus and be creative on establishing a new way of life to cope with various stages of disability. Contact your local ALS chapter, national or worldwide or other pALS – they’re great resources.”

On PatientsLikeMe:

Cris shared about Lunasin and being a part of the Duke trial. With 151 PatientsLikeMe members reporting that they’ve used Lunasin to treat their ALS, 140 treatment evaluations and almost 45,000 forum posts, Lunasin is a popular topic in the ALS community.

Want to learn more? Head to the forum to check what people are saying about Lunasin.

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Largest Patient Poll on ACA Shows Patients Value Health Care Law More Than the General Population, Are Less Inclined to Want a Repeal

Posted February 7th, 2017 by

Lowering Costs, Coverage for Pre-existing Conditions Remain Top Priorities; If Changes Are Required, Individual Mandate Should Go  

CAMBRIDGE, Mass., February 7, 2017—As Congress and the White House continue to discuss potential changes to the Affordable Care Act (ACA), PatientsLikeMe revealed results from the first large-scale poll to assess patient priorities for the health care law. The poll’s 2,197 respondents are among the estimated 133 million Americans living with chronic conditions.

Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety, said the poll gives voice to those who may be most heavily impacted by changes to the law. “Regardless of your political leaning, the great equalizer is that we’ll all become sick one day. At this time of uncertainty about the future of health care, listening to the voice of patients today will illuminate the path forward for all of us.”

Key findings from the poll show that overall, patients have the same concerns as the general population about health care costs, but see benefits in the law that the healthy may have overlooked:

  • More than half (57%) believe the ACA has been helpful to people living with chronic conditions.
  • Nearly half (46%) feel the ACA needs only minor modifications to improve it.
  • Over the last year, their out-of-pocket expenses for health care have either stayed the same (47%) or increased (43%).
  • Lowering costs is a priority for both patients in the PatientsLikeMe poll and for the general population, which took part in a December 2016 Kaiser Health Tracking Poll. Lowering the amount individuals pay for health care is an important priority for 94% of patients and 93% of the general population. Lowering the cost of prescription drugs is an important priority for 96% of patients and 89% of the general population.
  • Nearly half (46%) of PatientsLikeMe poll respondents felt that a repeal of the 2010 ACA “should not be done,” while one third (31%) of the Kaiser general population felt it “should not be done.”
  • When asked which one component of the ACA they would eliminate if they were forced to choose, PatientsLikeMe respondents were four times more likely to say they would eliminate the individual mandate vs. other components of the ACA.
  • When asked which one component of the ACA they would keep if they were forced to choose, PatientsLikeMe respondents were six times more likely to say they would keep mandatory coverage for pre-existing conditions vs. other components of the ACA.
  • The widest differences in opinion related to questions about a repeal of and government involvement in health care law, and were found between the general population, non-condition specific patients, and those who reported major depressive disorder (MDD) as their primary condition:
  • Of those living with MDD, 59% said that the health care law should not be repealed, vs. 45% of the overall PatientsLikeMe respondents and 31% of the Kaiser general population.
  • 42% of respondents living with MDD said decreasing federal government spending on health care should not be done, vs. 29% of the overall patient population and 18% of the Kaiser general population.
  • As for reducing the federal government’s role in health care, 37% of patients living with MDD said it should not be done, compared to 28% of the overall patient population and 20% of the Kaiser general population.

Okun said that patients living with MDD may have a stronger opinion about healthcare law given the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (MHPAEA), a law passed by Congress in 2008 and codified into rules in 2013 to ensure equal treatment coverage for mental illness and addiction. According to the National Alliance on Mental Illness (NAMI), before the law, “mental health treatment was typically covered at far lower levels in health insurance policies than physical illness.”

Full survey results and graphics are available at http://news.patientslikeme.com.

PatientsLikeMe Poll Methodology
Between January 23-27, 2017, PatientsLikeMe fielded a 19-question poll to a sample of its members in the United States who are living with chronic or progressive degenerative conditions. A total of 2,197 patients completed the poll, which asked both original questions and questions from a December 2016 Kaiser Health Tracking Poll to compare patient and general population responses.

Respondents had a range of chronic or progressive medical conditions and listed their primary condition as multiple sclerosis (13%), fibromyalgia (12%), Parkinson’s disease (6%), major depressive disorder (5%), ALS (5%), type 2 diabetes (3%) and multiple myeloma (3%), among many other conditions. The mean age of respondents was 54.5 years (the range was 18- >89). Of 1,840 respondents who gave information on level of education (83.8% of total), 1.0% had less than a high school diploma, 11.0% had high school diplomas, 38.3% had some college, 27.7% reported a college degree, and 22% reported post-graduate education. About one-third (36%) of patients had health insurance through their employer, one-third (35%) had Medicare; and the rest had a mix of other health care coverage including Medicaid, VA, military, and direct pay insurance, which includes insurance purchased from ACA exchange programs. A very small percentage (2.5%) of respondents said they had no health insurance. Nearly all respondents (95%) are registered voters. Their party affiliation is as follows: 37% say they are Democrats, 19% are Republicans; 15% are Independent; 13% preferred not to say; 11% are unaffiliated and 4% are Libertarian.

About PatientsLikeMe
PatientsLikeMe, the world’s largest personalized health network, helps people find new options for treatments, connect with others, and take action to improve their outcomes. The company has worked with every major pharmaceutical company and a range of government organizations to bring the patient voice to research, development and public policy. With 500,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 100 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

 


The power of your data: Patient empowerment

Posted December 14th, 2016 by

We’re more than halfway through 24 Days of Giving and we’ve been sharing how patient data has the power to create better communities, better care and a better you. So, while we’re on the subject of you – let’s talk more about how patients see themselves as the captains of their own health when it comes to care. That’s right: patient empowerment.

The results of a study we did a while back with our partners at Genentech have just recently been published in a scientific journal called “The Patient – Patient-Centered Outcomes Research.” What was this study about? Simple. It was about how finding healthcare information, interacting with peers and providers and access to healthcare contribute to your sense of empowerment as a patient with a chronic condition.

More than 3,988 of you participated. What was discovered? Check out some of the top takeaways:

Empowerment comes in two kinds:

  • Positive Patient-Provider Interaction (i.e., how favorably you view the care received from your healthcare provider)
  • Knowledge and Personal Control (i.e., how well you understand, manage and control your health condition(s))

Empowerment varies:

  • The average score on “patient empowerment” (on a scale of 15 – 75) was higher among patients with primary complaint of Parkinson’s disease (average = 62) and multiple sclerosis (average = 60) than those with fibromyalgia (average = 55) and chronic fatigue syndrome (average = 55).
    • Ooof, that’s barely English. Said another way, it appears that fibromyalgia and chronic fatigue syndrome patients feel slightly less empowered than people living with Parkinson’s or MS.
  • But across all conditions, those who were older, male, more educated and insured also reported significantly greater levels of empowerment.

What’s most important to you when it comes to empowerment?

For you, it’s important to:

  • be active in treatment goal setting with providers;
  • make sure that your provider spends enough time with you answering questions;
  • make sure that you understand the treatment and diagnosis, and any materials that are given to you; and
  • learn about and understand disease warning signs/symptoms, disease progression, and available treatment options. 

Knowledge is power:

How do you learn about your condition?

  • You use health websites like WebMD and Mayo Clinic (87%), PatientsLikeMe.com (60%), books (43%), magazines (40%), and journals (36%).
  • More than half of you get health information verbally from a doctor (59%).

What do you learn about your condition?

The information you find helps you learn about…

  • Treatment options (83%)
  • Course and progression of your disease (76%)
  • Signs and symptoms (68%)
  • Cause of condition (51%)
  • Initial diagnosis (50%)
  • Health monitoring (48%)

Doctor relationships:

  • Many of you are satisfied with your access to healthcare services (64%) and your relationship with your doctor (77%).
  • The majority of you (79%) feel like you have a say in your treatment decision-making, and are satisfied with the care you receive from your doctor (73%).
  • Some of you feel that your treatment goals don’t match your doctor’s plan (34%), or that you don’t spend enough time with your primary doctor during visits (36%).

Peer support:

  • For 47% of you, friends are a source of support and help care for and manage your condition.
  • Most of you manage your condition with help from others (74%) and learn from the experiences of those who are part of online communities like PatientsLikeMe (69%).

If you were one of the many who contributed to this research – thank you. What you shared proved that the differences in empowerment levels across conditions warrant further study. That’s the power of your data in action!

 

 

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The power of your data: How it works for you

Posted December 13th, 2016 by

For these 24 Days of Giving, we’ve been sharing how patient data has the power to change healthcare for the better. But how does the data you donate work for YOU in your own health journey?

PatientsLikeMe members are starting to answer that as part of an ongoing initiative, giving us feedback about the benefits of learning, tracking and connecting on PatientsLikeMe. And no, we’re not trying to toot our own horn here – we’re trying to see how and where you get value from the site so we can do more of what we’re doing right and less of…well, all the other stuff.

Even though this research is far from over, we wanted to share a couple of highlights from the community.

So, what are members who’ve taken the survey saying? How has PatientsLikeMe helped you to better understand your condition or improve some aspect of your care? Let’s have a look.

Here are the top 3 things you understand better since joining PatientsLikeMe*:

  • How your condition(s) might affect you – 67%
  • What might help you live better with your condition(s) – 63%
  • Treatment side effects – 61%

Others include:

  • Available treatments – 61%
  • Important factors in making decisions about treatments – 57%
  • What might help you get better – 50%
  • How to deal with other problems in your life (e.g. stress, work, money) that may be caused by your condition(s) – 49%

Here are the top 2 ways your relationship with providers and symptom management improved*:

  • Had better conversations with your healthcare professionals – 52%
  • Managed your symptoms better – 46%

Others include:

  • Been better at taking your medication – 34%
  • Tried a new way to manage side effects – 31%
  • Asked to see a specialist doctor – 25%
  • Start a new treatment – 16%
  • Stopped a treatment – 15%
  • Changed your doctor – 13%

Top takeaway? Participating on PatientsLikeMe seems to be having some positive benefits to understanding your condition, managing your symptoms and communicating with your care team. Now that’s some pretty powerful stuff.

 

*Note: Of those who took the survey, approximately 6-8% missing for each question. Percents are calculated out of valid non-missing responses.

 

 

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The power of your data: Members define compassionate care

Posted December 5th, 2016 by

For these 24 Days of Giving, we’re rethinking what it means to give and how the power of patient data can change healthcare for the better. Here’s a snapshot of your data in action.

Let’s talk compassionate care. Our partners at the Schwartz Center for Compassionate Healthcare had developed a scale based on input from 510 patients, 800 doctors and other caregivers to define compassionate care. But they wanted feedback from PatientsLikeMe members to validate this work and make sure it really reflected the patient voice. Every day, members like you team up with us and our partners, adding your experience to help improve measures just like this one.

So, how did it go? First,  members first shared what compassionate care means to them and if they thought the scale could be improved, and then a second group helped to see if the scale measured compassionate care and if it did so consistently.

Here are some top takeaways:

23 members weighed in on the first phase of the project, defining compassionate care.

Quick research insight: you might be wondering, “why only 23 members?” Well, the first phase of a project like this is sometimes called concept elicitation. That’s just a fancy way of saying you’re getting open ended responses from people, and not having them check an answer box. When that kind of research is done, fewer responses are needed to capture the main ideas.

How do members define compassionate care?

  • Many shared that continuity of care and communication between their providers made a difference in whether they felt they received compassionate care.

Need an example? Here it is again in members’ own words:

“I had two surgeries within days of each. Therefore, two different surgeons handling my care. One was incredibly compassionate, the other, not so compassionate.” – PatientsLikeMe member

I believe that too many cooks in the kitchen spoil the soup. I have a PCP, Cardiologist and a couple of other specialists involved in my care. When I get very sick, I am told to go to the ER. No one in the ER knows me and it is frustrating and cannot be safe. Tell a same story to 5 different people and you will get back at the end another completely different story from each one. A person should be able to have their own doctor manage their care, available to take over.” – PatientsLikeMe member

How can this scale be improved?

  • Many understood the questions, but felt they sometimes either didn’t apply to their situation, or they thought that their situation was difficult to summarize.
  • For those with multiple doctors and/or conditions, they found it difficult to decide who or which condition they should evaluate:

“State explicitly who we are rating…the clinician in charge of our last hospitalization or the clinician we normally see to treat our illness.  It is often different people, as it was in my case.” – PatientsLikeMe member

  • While they found the wording of some questions unclear, overall, members thought that the Schwartz Center Compassionate Care Scale did reflect what matters most to them.

For the second part of the research project, we asked members to actually answer and complete the measure. 

163 responded to the questions. How they answered helped us understand if the Schwartz Center Compassionate Care Scale measured compassionate care, and if it measured it consistently.

Leading the way (not always a good thing)

40% responded in the higher, positive range when asked if their healthcare provider “treated you as a person, not just as a disease” and whether they “showed respect for you, your family and those important to you.”

FYI: Sometimes when a large proportion of people answer the same response option on a questionnaire, it may indicate that the question is asked in a way that could lead people to answer a certain way, or it could mean that there are too many response options for a question. We’ll have to do some more testing to confirm if this is the case.

On a solid foundation

The measure was found to have good measurement properties, meaning that the different items seem to “hang well” together and to measure the same concept. Members also answered consistently when asked to complete the questionnaire twice.

Making some tweaks

But there’s always room for improvement, like taking another look at the response options for the questions. It may be that there are too many answers to choose from for the questions. Or the measure could also be improved by adding questions measuring the lowest levels of compassionate care.

The gist of it: Your voice matters in research – whether validating a measure like this one, giving feedback on a potential clinical trial or shedding light on life with your condition – there’s nothing like real patient data to affect positive changes in healthcare.

Thanks to all who participated and put the patient perspective into compassionate care!

 

 

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PatientsLikeMe Launches Virtual Trial for ALS Patients

Posted October 25th, 2016 by

Study With Major Academic Medical Center to Evaluate the Potential of the Soy Peptide Lunasin to Reverse ALS Symptoms


DURHAM, N.C., October 25, 2016—PatientsLikeMe and The Duke ALS Clinic have just completed enrollment in a virtual trial designed to test whether Lunasin, a peptide found in soy and some cereal grains, is helpful or harmful to patients living with amyotrophic lateral sclerosis (ALS). The Lunasin Virtual Trial is the first study of the supplement in ALS patients and follows a review analyzing its potential to reverse ALS in ALSUntangled, a website for clinicians, patients and researchers to explore alternative treatments.

Duke ALS Clinic Director and ALSUntangled Founder Richard Bedlack, MD, said he first heard about Lunasin’s potential from Mike McDuff, an ALS patient who took the supplement and experienced dramatic improvements in speech, swallowing and limb strength.

“I reviewed Mike’s records and reports, and both his diagnosis and his improvements appeared real,” Bedlack said. “Of course, Mike might have an ALS mimic we don’t know how to test for, or his body may have found a way to beat ALS independent of treatment. But there is one more possibility: his Lunasin regimen might have actually worked. I was compelled to design a study to treat other ALS patients with the same regimen to test if anyone else improves.”

As part of the trial, 50 participants will make three in-person visits to the Duke ALS clinic to measure the supplement’s impact over the course of the year-long study. They will also complete virtual check-ins as members of PatientsLikeMe every 30 days to update their weight, complete an evaluation of their Lunasin regimen, and complete the ALS Functional Rating Scale (Revised, ALSFRS-R), a widely-used patient-reported outcome developed by PatientsLikeMe that allows patients to see their disease progression visually and in context.

Bedlack said the study’s design is patient-centric and eliminates many of the frustrations patients say are inherent in traditional clinical trials. The design also likely contributed to what Bedlack calls the fastest enrollment of any trial in ALS history: the virtual trial took just over five months to fill.

“There are no placebos, and we made the inclusion criteria very broad so that even ALS patients who can’t qualify for other studies due to their long disease duration or use of a ventilator can qualify,” Bedlack said. “We’re also limiting the burden on the participants by helping them check in online from the comfort of home. And we’ve already published the protocol on our ALS Reversals website. We’re taking a completely open approach so that anyone, anywhere, can see the details of what we’re testing and learn more about whether this is helpful, harmful, or does nothing at all. I think all of these factors made the trial very attractive to ALS patients.”

PatientsLikeMe began as a website for people living with ALS to openly share their experiences with each other and study alternative and off-label treatments. Vice President of Innovation Paul Wicks, PhD, said the company’s research focus gave ALS patients a science-based platform to monitor themselves, get ideas from other patients, and play a more active role in their own healthcare. That focus has also helped the company produce more than 30 published research studies on the condition, including a 2011 observational study in Nature Biotechnology that refuted the results of a 2008 clinical trial on the efficacy of lithium carbonate on ALS. More recently the company has worked with Bedlack to study the frequency of ALS plateaus and reversals. Findings from that study were recently published online and in the March 2016 print edition of the journal Neurology.

Anyone taking Lunasin outside of the Lunasin Virtual Trial is invited to separately track their experiences on PatientsLikeMe at www.patientslikeme.com.

ALS is a degenerative disorder affecting upper motor neurons in the brain and lower motor neurons in the brain stem and spinal cord. Symptoms include progressive weakness, atrophy, fasciculation, dysphagia, and eventual paralysis of respiratory function.

Study Design Methodology

The Lunasin Virtual Trial is a 12-month, widely inclusive, largely virtual, single-center, open-label pilot trial utilizing a historical control group. Participants will be asked to sign in or register for an account on www.patientslikeme.com with the help of the study coordinator and will be given a welcome packet that includes a one sheet description of the study, a checkup checklist, and the first month of a total 12-month supply of Lunasin. User IDs associated with participants’ PatientsLikeMe account will be recorded by the study coordinator and shared with study staff at PatientsLikeMe. After the initial in-clinic visit, participants will be asked to enter the following data online: weight, Lunasin study drug regimen evaluation, and their ALSFRS-R score.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 80 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact                                                                                                Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
+1.781.492.1039


Paul Wicks weighs in on a new, patient-conceived project

Posted August 22nd, 2016 by

Partnering with patients is at the very core of what we do, but a new collaboration with longtime ALS member Steve Saling (SmoothS) is giving that a new spin — it was Steve’s idea and he’s been driving the project from day one.

Since his diagnosis in 2006, Steve has made it his mission to help other pALS live a better quality of life. He’s founded the ALS Residence Initiative, which has grown from the first fully-automated, vent-ready ALS Residence in Chelsea, Mass., to multiple residences across the country that offer pALS independent living alongside 24-hour care.

Steve sat down with us last week to share about his latest project: producing a series of educational short videos to help caregiving and medical staff better understand the unique care needs of pALS.

But what does this patient-conceived project mean for research? We caught up with our VP of Innovation, Paul Wicks, PhD., to chat more about this project from a research standpoint. Here’s what he had to say:

Working with members for research is in PatientsLikeMe’s DNA, but this collaboration with longtime ALS member Steve Saling (SmoothS) takes it to another level — the project was conceived and driven by Steve. What do you think about this unique partnership? What makes it different than other projects, and what are your expectations? 

There is certainly a lot of buzz out there about being “patient centered” these days – there is a risk that it’s tokenism rather than truly empowering – which means giving up some degree of control to others. In our case we’ve offered Steve access to powerful survey tools and our highly engaged population so he can develop his research about the experiences of other patients like him to help shape the services he designs. That’s really the core of what we do here, bringing the patient voice to decision makers in healthcare, and the reason this is so powerful is that as an architect, as an advocate, as a leader in the space, we’re helping Steve to make better decisions about the unmet needs of his community. My hope is that by giving people an anonymous survey they can complete at their leisure from home or with the use of assistive technology that we might hear from people with ALS who don’t normally have a voice.

In its early stages, the survey was more geared towards pALS and cALS receiving and giving institutional care. Can you talk about the evolution of the project with Steve to include those not in a care setting like that, too? 

We’ve been following Steve’s pioneering work in developing his ALS Residence Initiative for a long time, in fact I’ve had the pleasure of meeting him for a beer a couple of times and I even mentioned it in a TEDx talk as far back as 2010. As a researcher with 13 years experience in ALS I know that while residential care is the right fit for some people with ALS, others don’t have that option or couldn’t imagine being anywhere other than their homes. We also recognized that people have a mix of caregivers, both informal (e.g. spouses, children) and professional (e.g. home help, nurses) and that many patients have a blend of care from different sources throughout their journey. We also wanted to broaden the survey as much as possible so that we could hear from as many people as possible.

One of the goals is to learn from members to get more background context for a series of educational caregiver videos that Steve is producing and PatientsLikeMe is also sponsoring. What else do we hope to learn? 

When you or a loved one is diagnosed with ALS, you get a lot of educational material about the disease. It’s full of statistics and medical jargon about neurons and genetics, but you don’t get much support about how to live with it, how to cope. That could be something as simple as little tips for coping with weakness to something as complex as how to choose the right wheelchair or how to safely transfer with a hoist. Neurologists and experts and professionals can advise and consult, but in most cases they haven’t been there day after day to assist with the basics of daily life that become so hard with ALS, so I’m hoping that with our help Steve can build a permanent resource that will be a great “how to” guide for practical (and sometimes even awkward or embarrassing) topics that people encounter every day.

Caregiver needs are as wide-ranging as the number of people living with a condition, but what do you think is unique about the needs of caregivers of pALS? 

Fear of the unknown is a big one – although we’re seeing increasing awareness about ALS thanks to the Ice Bucket Challenge and movies likeThe Theory of Everything, most people don’t know what ALS is going to involve for them when their loved one is first diagnosed. Many people will want to tiptoe gently in the shallow end of knowing about it rather than diving in at the deep end – it can be hard enough coping with the issues in front of you without having to worry about problems that may or may not arise further down the line. Unlike something like cancer we also lack treatments in ALS, so it can feel like you’re just waiting for the next symptom rather than actively fighting it with drugs or surgery. Perhaps this is just bias, but ALS also tends to affect some of the strongest and most courageous people I’ve known and it can be hard for them to accept that they need help from others – they’ve often been successful professionals or highly active people and so admitting that they need help to walk or to get dressed doesn’t always come naturally to them.

Is anyone else doing research projects like this one that you know of?  

Over the years I’ve seen a little bit of relatively small-scale qualitative research like this published in the main ALS Journal usually from nurses, physical therapists, or occupational therapists, but I’m pretty confident this is the first conducted by a patient!

 

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PatientsLikeMe Names Marni Hall Senior Vice President

Posted July 11th, 2016 by

Former Director within the FDA to Spearhead Company’s Research and Policy Initiatives

CAMBRIDGE, Mass., July 11, 2016—PatientsLikeMe announced today it has appointed Marni Hall, PhD, MPH, as its new Senior Vice President of Research and Policy. A distinguished research scientist and public policy expert, Hall will develop and direct the strategies and teams focused on expanding the role of real-world evidence in precision medicine, and in the research agendas of PatientsLikeMe and its customers.

Hall joins the company from the U.S. Food and Drug Administration (FDA) where she was most recently Director of Regulatory Science within the Office of Surveillance and Epidemiology (OSE) for the FDA’s Center for Drug Evaluation and Research (CDER). In this role, Hall became an expert at sourcing and analyzing big data sets, including adverse event reports, claims, -omics, and other data useful to risk assessment and risk management activities. She led data management and program operations, as well as research and development efforts to identify, evaluate, and implement new data, tools, and methods to support regulatory decision making. Specifically Hall’s team explored big data sources such as the FDA Adverse Event Reporting Systems (FAERS) and the Sentinel Initiative, and led post-market safety studies and programs using observational data to gain insight into drug safety and drug performance.

PatientsLikeMe CEO Martin Coulter said Hall “will now apply her strategic research and operational expertise to help us work with our members and partners to use patient-reported data in new and innovative ways, so that the patient experience can lead to even more significant developments and discoveries, such as improved outcomes.”

According to Hall, the new opportunity allows her to continue to do research in a scientifically-rigorous and patient-centered setting. “PatientsLikeMe has been a critical force in documenting and analyzing real-life patient experiences and evolving the role of real-world evidence in clinical and public health research. My goal is to extend its impact, so that the patient experience drives a future where healthcare is able to emphasize individual needs and preferences. I’m thrilled to join a company that is so focused on helping people thrive each day, while collecting data essential to this emerging field,” Hall said.

A research scientist by training, Hall has spent nearly two decades at the intersection of science and policy. She started her career studying toxicology and molecular epidemiology at Columbia University. After serving as Program Director in the Public Health Group of External Medical Affairs at Pfizer, Hall joined the FDA’s Office of Planning and Informatics (OPI) in 2008 as a Principal Analyst. In this role, she initiated and led the development of CDER’s data standards plan. She was appointed Director of Regulatory Science in 2011.

Hall holds bachelor of science degrees in chemistry and in society, technology, and policy from Worcester Polytechnic Institute. She also holds a master’s degree in public health from Columbia University’s Mailman School of Public Health as well as a master of science degree in biochemistry and a PhD in toxicology from Columbia University’s Graduate School of Arts and Sciences.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate #dataforgood: data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 70 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
+1.617.548.1375


What’s your experience with accessing your electronic medical records?

Posted May 17th, 2016 by

Hi everyone! I’m Sally Okun, Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe. Most of you probably already know me, but just in case you don’t, I really focus on bringing the patient voice to affect better treatment, services and care, and to be sure that the needs of patients are at the front of healthcare discussions. I’m also the link between PatientsLikeMe and government and regulatory agencies.

And that’s what brings me to the blog today. The Government Accountability Office (GAO) is working on a new research study and they want to hear directly from patients like you about your experiences with your electronic medical records. Specifically the team at GAO is interested to learn about your experience accessing your health information electronically for viewing it yourself, downloading it to a computer or other device and/or sending it to someone else of your choosing.

Find out more below about the GAO, this new research project and who to contact if you’d like to participate.

The Government Accountability Office (GAO), an agency that evaluates federal programs for Congress, is conducting research to examine patients’ experiences with electronically viewing, downloading, or transmitting their health information, which will be incorporated into a publicly available report. GAO would like to hear directly from consumers to learn about any relevant experiences they may have had in this regard (e.g., viewing health information in an online patient portal, downloading health information into a personal health record app, sending/receiving health information to/from a physician).

If you would like to volunteer to discuss your experiences with GAO, whether positive or negative, please send an email with your first name directly to GAO at HealthInfoAccess@gao.gov by June 7, 2016. GAO will contact you to schedule a short, anonymous telephone interview at your convenience to discuss your experiences.

GAO will NOT collect any personal information during the interview, such as your full name or other identifying information. In addition, GAO will only ask questions about your experiences electronically accessing your health information, not any questions about the nature of your health information itself. Any information GAO collects from consumers will be published in a manner that protects your confidentiality and anonymity.

Let your voice be heard!

 

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A new precision medicine program for ALS patients

Posted May 4th, 2016 by

Last month, we talked about precision medicine and what it could mean for psychiatry. What’s precision medicine again? It’s a relatively new way of preventing and treating illnesses that takes into consideration people’s genetic makeup, environment and lifestyle.1

Today — just in time for ALS Awareness Month — we’re digging deeper into how it can be used to treat ALS. Our partners at the ALS Therapy Development Institute (ALS TDI) run the world’s first and largest precision medicine program in ALS, and here’s what it’s all about…

How the program works

The goal of ALS TDI’s program is to identify subgroups of ALS and possible treatments for them using a patient’s personal data, genomics and iPS cell technology … and then test the most effective treatments in a clinical trial.2 Check out the graphic below for an overview of what program participants can expect (tap to make the image larger).

 

 

If you’re living with ALS, head over to the forum and tell us what you think about using precision medicine in ALS care — would you participate in a program like ALSTDI’s? Add your voice and let’s learn more, together.

 

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1 www.nih.gov/precisionmedicine

2http://www.alstdi.org/precision-medicine-program/


Your data doing good: The Lithium study

Posted December 18th, 2015 by

During #24DaysofGiving this December, we’re highlighting all the good your health data donations are doing. And this time, we’re starting at the beginning. 

As you probably know already, PatientsLikeMe launched its first community in 2006 for people living with ALS, also known as Lou Gehrig’s disease. Two years later, we had an amazingly engaged and research-focused community who were willing to share data to change what the world knows about ALS. This neurodegenerative condition is fatal and takes away people’s ability to walk, speak, use their arms, and eventually breathe. This is exactly what happened to our founders’ brother, Stephen.

So, in 2008, when the results of an Italian clinical trial were published in a highly respected scientific journal saying that the use of lithium carbonate could slow the progression of ALS, we had a member community that was hungry to learn more. Spearheaded by two very involved members – a Brazilian ALS patient named Humberto and a caregiver in the US named Karen – we set out on a journey to collect and analyze thousands of patients’ real-world data to understand how lithium carbonate was working beyond the clinical trial setting. The result was unexpected and unmatched in the world of medicine.

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RWJF Awards Grant to PatientsLikeMe to Develop New Measures for Healthcare Performance

Posted December 8th, 2015 by

Patient Network to Work with the National Quality Forum to Ensure Patients Drive Healthcare Value  

CAMBRIDGE, MA., December 8, 2015PatientsLikeMe has been awarded a $900,000 grant from the Robert Wood Johnson Foundation (RWJF) to help jumpstart changes that will amplify the patient voice in the measurement of healthcare performance.

A portion of the grant funds a collaboration between PatientsLikeMe and the National Quality Forum (NQF) to develop, test and facilitate the broader use of patient-reported outcome measures (PROMs) to assess patient-reported health status. While PROMs have been used in clinical research, they are rarely used in routine clinical care to assess provider performance. In such settings, performance is primarily assessed by what was done to the patient (using process measures) and what happened to the patient (using clinical outcome measures), but not always by what may be most important to the patient.

The grant comes as value-based purchasing is gaining ground in both the public and private sectors, with the Centers for Medicare & Medicaid Services (CMS) setting aggressive targets for linking performance related to quality, value and patient-centered care to payment. “Measuring what is relevant, useful and actionable for patients has never been more important,” said PatientsLikeMe Co-founder and President Ben Heywood. “This initiative will help quantify the patient experience at the clinical level, so that real patient outcomes can start to prompt changes in behavior, help tailor care, and improve reimbursement. With it, we’ll start to move the whole system toward more patient-centered care.”

NQF is a not-for-profit, nonpartisan, multi-stakeholder, membership-based organization that works to help advance improvements in healthcare. It evaluates, endorses, and selects measures of quality, safety and cost for accountability. The collaboration with PatientsLikeMe is one of several that are part of NQF’s new Measure Incubator, an innovative effort that holds the potential to facilitate measure development and testing more efficiently through collaboration and partnership.

NQF’s Chief Scientific Officer, Helen Burstin, MD, MPH, sees the collaboration with PatientsLikeMe as the answer to an urgent need for new measures that can improve health and healthcare outcomes.

We have an abundance of clinical measures, but we need to better incorporate the voice of the patient into performance measurement,” said Dr. Burstin. “We must be able to accurately measure and understand the patient’s day-to-day experience living with pain and fatigue as well as how they are functioning with routine activities to get the full picture. PatientsLikeMe’s inherent focus on patients will move us closer to having the patient voice be the driver and definer of health care value.”

Creating measures that matter to patients became easier in 2013 when RWJF gave PatientsLikeMe a grant to create the Open Research Exchange (ORE), an open-participation platform that allows researchers to connect with PatientsLikeMe’s 380,000 members to create, test and validate new measures. The collaboration with NQF will initially use the ORE platform to ask patients to prioritize measures, then PatientsLikeMe will develop and test them. This process will ensure that when implemented in clinical care settings, the measures broadly show a patient population’s progress and reflect health outcomes that are important to patients that can then be used to assess an organization’s performance and ultimately to determine reimbursement.

About Patient-Reported Outcomes Tools & Performance Measures

Patient-reported outcomes (PROs) are defined as any report of the status of a patient’s (or person’s) health condition, health behavior, or experience with healthcare that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else. Various tools such as questionnaires, scales, or single-item measures that enable researchers, administrators, clinicians and others to assess patient-reported health status for physical, mental, and social well-being are referred to as PRO measures (PROMs). PROMs have been commonly used in clinical research because they are based on patient input, and can help ensure that the treatments developed actually help people feel better and improve symptoms or function. Their application in the clinical care setting is limited, but growing interest among various stakeholders is moving PROMs into more routine use for performance measurement. An example of this is the widely used Patient Health Questionnaire 9 (PHQ-9) that screens and monitors the severity of depression. In a clinical setting, PROMs can help monitor patient progress over time at the individual and population level and support shared decision making. A PRO performance measure (PRO-PM) is based on aggregated patient-reported data and is used to assess quality of care for accountable entities, such as hospitals, physician practices or accountable care organizations (ACOs). NQF endorses PRO-PMs for purposes of performance improvement and accountability.

Contact
PatientsLikeMe
Katherine Bragg
kbragg@patientslikeme.com
617.548.1375


Your data doing good: The POEM Study

Posted December 4th, 2015 by

When you share your health data, we all learn

Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need.

During #24DaysofGiving this December, we’ll highlight some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing. Here’s a great example: the POEM Study, which showed that the secret ingredient to managing your health may just be patients like you.

PatientsLikeMe was founded on a simple idea: when patients connect with each other and share their experiences, they can learn how to better manage and treat their disease and improve their outcomes. Over the years, members proved this is possible time and again. But would a rigorously-conducted scientific study confirm what we already thought to be true?

Our partner UCB wanted to work with us to find out. They helped to build and grow the epilepsy community on PatientsLikeMe back in 2010.  At the time, they were thinking about patient services that you might not expect a pharmaceutical company to focus on, things like information, advocacy, and education. In 2011, we worked together on a pilot study with people living with epilepsy. We learned that people who joined PatientsLikeMe felt that they better understood their own seizures. They even reported improved adherence to their medications. The results also underscored a significant piece of understanding about this particular population; prior to joining the site, one out of three epilepsy patients had never met another person living with this condition.

As the community grew, so did our understanding of what matters to these patients. Then in 2013, we found another partner who wanted to help create a new study focused on an even more specific group: veterans living with epilepsy, an often isolated and stigmatized part of the community. The question we were trying to answer was this: could a network like PatientsLikeMe, with its epilepsy-specific tools and resources, help those who found out about the site from their doctors improve their ability and confidence to manage their condition?

Along with UCB we collaborated with the VA Epilepsy Centers of Excellence in a six-week study of veterans using PatientsLikeMe. The evidence showed that by sharing their health data and connecting with each other online, these patients’ outcomes improved. The nearly 100 veterans who took part in the study grew more confident that they could take care of themselves, and did a better job of managing their care. The results were published this year in Neurology, a leading scientific journal in the field.

It all started with one partner, one community and a whole lot of data sharing. And now, five years later, there are nearly 10,000 epilepsy patients using PatientsLikeMe and helping one another to live better every day. You are the secret ingredient to helping others better manage their health. Thank goodness it’s not a secret anymore.

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