22 posts tagged “24 days of giving”

Another successful 24 Days of Giving!

Posted December 27th, 2016 by

That’s right – thanks to your awesome rallying, we reached our 24 Days of Giving goal again! Together, the PatientsLikeMe community donated a total of 428,459 health data points. We’ll be making a $25,000 donation to Make-A- Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

What did the community donate? Check out this graphic for a by-the-numbers view.

 

 

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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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24 Days of Giving: Halfway checkpoint

Posted December 12th, 2016 by

The midpoint. The halfway mark. Call it what you want, but we’re smack in the middle of 24 Days of Giving. So, where do we stand on the data donation front? Let’s take a look:

  • 12,340 treatment reports
  • 90,610 symptom reports
  • 72,593 health outcomes

So if you’ve been donating, keep at it. If not, why wait? Your data has power – just watch what some PatientsLikeMe employees have to say about it.

Every piece of health data you share on PatientsLikeMe over the next 24 days will contribute towards a $25,000 donation goal to Make-A-Wish® Massachusetts and Rhode Island. You donate your experiences that can help someone like you, and we’ll donate on your behalf to help fund life-affirming wishes for seriously ill children. 

 

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The power of your data: Improving clinical trials

Posted December 6th, 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. Another example of the impact your data can have? Making the clinical trial experience better for patients like you.

Now let’s be real, that’s no short order. So where do we even start? With you, and every new member who joins the community. Every day, members are sharing their thoughts on trials, what would make them most likely to take part, and what would turn them off. It’s an ongoing research experience, but let’s take a look at snippet of results so far:

4,718 members have taken part so far…

How do you learn about clinical trials?

  • 59% learned about a trial from your health team, 24% via the web.
  • 24% of you said you first thought of participating in a trial without suggestion from anyone else. For those who participated in past trials, the first person to suggest that you participate in a trial was a doctor (43%) or another healthcare provider (19%).
  • Those of you who took part in clinical trials decided to because of your own desire (80%).

Key takeaway: Most people are still finding out about trials through their care teams or providers, but when it comes to actually deciding to take part, it’s your own desire that motivates you.  

What are your impressions of clinical trials?

Side note: These results are just from those that have taken part in a trial.

  • 55% of you were very or extremely satisfied, and 51% would tell other patients about the trial. Not bad, but not awesome.
  • 9% considered dropping out — side effects and worsening of overall health after trial were the main reasons.
  • You said the best parts of the trial were the opportunity to contribute to science and medicine (78%), and learning more about your condition (46%).
  • You said that the worst parts of the trial were the chance of being given an inactive drug or placebo, experiencing negative effects and discomfort with study procedures.
  • Only 38% of you recall being told about the results. Yikes!!! As you know at PatientsLikeMe, we have a give data, get data philosophy. And you can better believe we work with our partners to get on board with that philosophy, too.

Bottom line: Trial results need to get back to those that take part. Period.

Thanks to all who’ve participated and put the patient perspective into improving clinical trials!

 

 

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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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Ryan and Emma’s stories: Make-A-Wish® Massachusetts and Rhode Island

Posted November 30th, 2016 by

Last December, patients like you came together to donate more than 476,000 health data points, including nearly 30,000 treatment reports and close to 120,000 symptom reports. The data that everyone selflessly donated has a heartbeat that will keep on giving – helping other patients like you and accelerating research.

And because you helped us reach our goal, your data also made wishes come true for two children with life-changing medical conditions. On your behalf, PatientsLikeMe made a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island, which helped Ryan and Emma take a break from aggressive and uncomfortable treatments and doctors’ visits to go on faraway adventures with their families. Check out their stories:

Ryan’s Island Adventure

Thirteen-year-old Ryan loves warm weather, swimming and being at the beach. After being diagnosed with a gastrointestional stromal tumor, surgeries and treatment kept Ryan away from seeing his friends and playing his two favorite sports – basketball and baseball. Ryan daydreamed about leaving his worries behind and going on an island adventure. When he learned that his wish would be granted, more than anything, Ryan wanted to take a family vacation to Beaches Resort in Turks & Caicos!

From the moment he landed, Ryan couldn’t wait to explore the tropical island. He was greeted with the most spectacular views of palm trees and white sand beaches. Ryan and his family explored the villages that made up the resort – each themed after Italy, France, and of course, the Caribbean. His days were filled with waterslides, sun, relaxation, and a break from the everyday stress that had begun to define his daily life.

Being given the opportunity to travel was a perfect escape from doctor’s appointments and medical treatments and Ryan felt a new sense of hope upon his return home.

Emma Visits Hawaii

Eight-year-old Emma’s passion for the sea helped her through months of treatment for acute lymphoblastic leukemia, as she imagined beachside adventures outside of the hospital walls. Emma wished to go to “paradise” with a trip to Hawaii!

Upon arrival on the island, Emma headed straight to the azure water and warm sands. The adventurous girl spent her days swimming, snorkeling, surfing and sailing. Surfing was her favorite, and she “totally rocked” at it, standing up on the board on her first attempt! On land, Emma loved experiencing the color, tastes and spectacle of a traditional luau. The incredible scenery made the hospital feel like a distant memory.

Emma’s visit to Hawaii marked the beginning of a new chapter for her and her family. Together they celebrated the end of her treatment and now look forward to a bright future.

 

 

 

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PatientsLikeMe Kicks off 3rd Annual “24 Days of Giving”

Posted November 29th, 2016 by

People Living With Chronic Conditions Encouraged to Donate Health Data for 24 Days

November 29, 2016 – CAMBRIDGE, Mass. – Beginning today on #GivingTuesday, PatientsLikeMe is kicking off its third-annual #24DaysofGiving to celebrate “the tradition of generosity.” Over the next 24 days, PatientsLikeMe is asking members to rally together, rethink what it means to give back and donate their health data on PatientsLikeMe.com after donating to their favorite charity or nonprofit. PatientsLikeMe is giving back, as well. During 24 Days of Giving, the company will once again showcase important research that has benefited from patient data in the last year. For every piece of health data shared during 24 Days of Giving, PatientsLikeMe will  make a donation to Make-A-Wish® Massachusetts and Rhode Island, up to $25,000, to help fund life-affirming wishes for seriously ill children.

Since it first launched in 2014, PatientsLikeMe members have donated nearly one million data points about their health during 24 Days of Giving, including 60,000 treatment reports, 218,000 symptom reports and 269,000 health outcomes reports. As a result, over the last two years, a total of $40,000 has been donated to Make-A-Wish Massachusetts and Rhode Island. Through these donations, four wishes have been granted to children in the Massachusetts-Rhode Island area.

PatientsLikeMe is a patient network that aggregates the health data members share so that others can learn more about how to improve their outcomes and contribute data for research. Health data includes information about a disease or condition – how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. PatientsLikeMe analyzes the donated data to spot trends in specific diseases and works with partners to incorporate patient-reported evidence in their research. Partners can then create new products and services that are more in tune with what patients experience and need.

“Over the past two years of 24 Days of Giving, new and existing members have generously donated their health data for good – whether through their treatment evaluations, symptom reports or other health updates,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing, Technology and Operations. “We hope people will join us again this year, because the data they share on PatientsLikeMe during 24 Days of Giving – and every day beyond – gives others the best information to make more informed health decisions, and could change someone’s life for the better.”

“24 Days of Giving” will be active across PatientsLikeMe’s Twitter, Facebook and Instagram social media channels through December (#24DaysofGiving). Anyone who is living with a chronic condition can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life for free. Existing members are encouraged to keep their profiles up-to-date or complete a new treatment evaluation. To learn more, go to www.patientslikeme.com.

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 blogTwitter or Facebook.

About Make-A-Wish® Massachusetts and Rhode Island

Make-A-Wish® Massachusetts and Rhode Island grants wishes for children between the ages of 2½ and 18 years of age with life-threatening medical conditions to enrich the human experience with hope, strength, and joy. For a child with a life-threatening illness, a wish fulfilled provides profound joy and lasting hope to keep fighting and dreaming for the future. In its 29-year history, the organization has granted more than 7,500 wishes for children in Massachusetts and Rhode Island. Visit Make-A-Wish Massachusetts and Rhode Island at www.massri.wish.org for more information, to make a donation, or to learn about volunteer opportunities. Find us on Facebook at Facebook.com/MassRIWish, Twitter at Twitter.com/MakeAWishMassRI and Instagram at Instagram.com/MakeAWishMARI.

Contact
Katherine Bragg
kbragg@patientslikeme.com
617-548-1375


You helped us reach our goal for #24DaysofGiving!

Posted December 30th, 2015 by

That’s right, you did it again! A big thank you to the PatientsLikeMe community for helping us reach our #24DaysofGiving goal for the second year in a row. Together, you donated 476,243 health data points!  We’ll be making a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

The final numbers? Check them out:

  • 28,998 treatment reports
  • 117,948 symptom reports
  • 122,249 health outcomes

To show our appreciation for all that you’ve done, we wanted to do something special in return. We made a video featuring some PatientsLikeMe staff talking about why your data donation matters. You’ll hear from co-founders Ben and Jamie Heywood, CEO Martin Coulter and team members from all parts of PatientsLikeMe.

From all of us at PatientsLikeMe, thank you for re-thinking what it means to give this holiday season.

Data for you. For others. For good.

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Your data doing good: Our collaboration with the FDA

Posted December 21st, 2015 by

During #24DaysofGiving this December, we’ve been highlighting all the good your health data is doing. For this one, we wanted to share more about how the data you donate is the centerpiece of a new collaboration between PatientsLikeMe and the Food and Drug Administration (FDA).

Even after a new medication or treatment makes it through the rigorous clinical trial and FDA approval process, we still have a lot to learn about its impact in the real world. Clinical trials are considered the ‘gold standard’ of medical research, but they usually only account for a small fraction of the population that will eventually be prescribed that new treatment.

Today, the FDA reviews large claims data and uses a spontaneous reporting system of individual case safety reports to find out how a product is doing once it’s approved and in the market. If you think that sounds complicated and not very clear, you’re not alone. Basically, the FDA is waiting for a safety signal, dramatic event or adverse event (all fancy words for side effect) to happen that drug manufacturers are required to report. The problem is if you – the patient – or your doctor doesn’t submit a report about your experience to the drug manufacturer, then the drug manufacturer can’t report it to the FDA.

That’s why PatientsLikeMe and the FDA decided to collaborate this year. We wanted to see if patient-reported data from PatientsLikeMe could help the FDA identify new information about approved treatments when they are used outside of clinical trials. Since you generate the data, it provides important real-time insights into your experience over time, including drug tolerance, adherence and quality of life. In short, we’ll be learning if the aggregated real-world, longitudinal data you report can help the FDA better assess and manage risks.

But this isn’t entirely new to us here at PatientsLikeMe. We’ve actually been tracking the treatment effects you share about since 2008. In all, and thanks to your reporting, we’ve collected more than 110,000 side effect reports on 1,000 different medications. That’s information the FDA will now be able to study and analyze in addition to more traditional sources.

Now you know what’s behind our friendly emails and reminders when we ask you to update your treatments or complete a treatment evaluation during #24DaysofGiving. Everything you donate is going to help a whole lot of people!

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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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At the #24DaysofGiving halfway point, you can help get us to our goal!

Posted December 15th, 2015 by

Just a couple of weeks ago we recognized  #GivingTuesday, a day to celebrate generosity. But this idea of giving back isn’t just about one day – it’s bigger than that. We’re asking you to re-think what it means to give back by donating your health data this December for what we call #24DaysofGiving.

And right now, we’re at the pivotal midway point and we wanted to give you an update – you guys are data donation rock stars! Through the health data that everyone is sharing, you’re helping reach our goal of donating up to $20,000 to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

What health data is everyone donating?

At this point in the month, you and your community have already contributed:

  • 17,227 treatment reports
  • 68,518 symptom reports
  • 73,203 health outcomes measures

In total, you’ve donated 280,610 health data points!

The best part is that there’s still a bunch of time left for you to help us reach our goal. Getting started is easy. Just log in, go to your 3-stars page, About Me, or Treatments and do your thing!

If it’s true that you get what you give – let’s keep giving good, together.

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Your data doing good: A collaboration with Walgreens

Posted December 13th, 2015 by

During #24DaysofGiving this December, we’re highlighting all the good your health data is doing within – and well beyond – the PatientsLikeMe website. Here’s another great example. Did you know the side effect data you report on your PatientsLikeMe treatment evaluations is helping pharmacy customers understand how the medications they take may affect them, too?

It started back in February this year when we kicked off a new collaboration with Walgreens, the nation’s largest drugstore chain. The idea was simple; by joining forces, we could help bring your experiences to many more people making treatment decisions. Now anyone researching a medication or filling a prescription on Walgreens.com can see a snapshot of how PatientsLikeMe members have been impacted by that medication, including side effects and their severity. There are currently about 6,000 medications at Walgreens pharmacies where others can learn from your experiences, and the data (de-identified!) is updated daily based on what you report on PatientsLikeMe.

This partnership marks the first time a company has displayed your real-world data on their website. Why did they do it? Because your data and experiences can help patients, wherever they are, understand more about the treatments they’re taking, and make more informed health decisions. Our partners understand and recognize that.

Here’s another reason (one you can probably relate to). To find side effect information for a treatment, you normally have to scour the Internet or read that sheet of paper that gets stapled to your prescription bag. (Does anyone really read that?) But information like that only represents a tiny fraction of the population, usually just a few hundred or at most a few thousand who took part in the clinical trial for the treatment. The thing is, you might be taking the treatment off-label. In fact, more than one in five outpatient prescriptions written in the U.S. are for off-label uses, and 75 percent of these uses have little or no scientific support[1]. This means the treatment may affect people a little bit differently. So having real-world experiences like yours gives a broader picture for people trying, or deciding to try, that treatment.

The next time you record a treatment evaluation, know that you’re doing much more than you think. By sharing information about side effects, you’re making it easier for someone else to make a better decision for them. We’re truly better, together.

Share this post on Twitter and help spread #dataforgood during #24DaysofGiving.

 


[1] Radley DC, Finkelstein SN, Stafford RS. Off-label prescribing among office-based physicians. Arch Intern Med. 2006;166(9):1021-1026. doi: 10.1001/archinte.166.9.1021.


Your data doing good: IPF treatment experiences

Posted December 12th, 2015 by

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, we’re highlighting 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.

Every year, the Food and Drug Administration (FDA) approves new medications that can help people living with life-changing conditions. But with new treatments come new questions. And that’s exactly what happened at the end of 2014 for people living with idiopathic pulmonary fibrosis (IPF).

IPF is a rare condition that causes scarring in deep lung tissue over time and has no cause or cure, and before October 2014 no available treatment. That’s when two FDA-approved medications for the condition became available, simultaneously. They had the potential to make a difference in the lives of IPF patients, but how could they learn which medication might be right for them? If they started taking one of the new treatments, would they experience the side effects that were reported by the FDA? Would the side effects go away, or get better? In short: were the drugs worth taking?

We set out on a journey with members of the PatientsLikeMe IPF community to get answers from the best source possible—other patients who had already started to take the treatments. We worked together to understand their complete experience, everything from how they learned about the new treatments and if they were hard to access, to their side effects and what might cause them to switch treatments. The data that the community shared (all of it) is helping other members better understand what could work for them.

Here’s just some of what we discovered, and what others are learning, thanks to the data that members donated:

About making choices and getting access
Physician buy-in matters. In fact, physicians were active participants in 60-70% of the treatment decisions IPF patients made. But once they made a choice to begin treatment, patients were challenged to work around obstacles that prevented them from getting access to the treatment, things like how to get reimbursed and even where to fill the prescription.

About the side effects vs. the clinical trial
The overall side effects when first starting the medication were similar. Most patients, between 69-72%, reported ‘none’ or ‘mild’ side effects for one or other treatment. Patients also reported some side effects more often than those patients who were in the clinical trials. For one medication, patients reported higher rates of decreased appetite compared to the clinical trial participants (27% vs. 8%) and sensitivity to sunlight (18% v. 9%).  For the other treatment, patients reported a higher rate of decreased appetite (19% v. 11%) compared to the clinical trial participants.

Switching it up
Most patients, between 55-57%, aren’t sure if they are satisfied with their treatment, but only a small percentage, between 8-10%, report that they are likely to stop taking the medications

There is a lot more to learn here:

We’ll all continue to learn in real time as more and more IPF members share their experiences with the treatments, but the IPF example underscores why giving your data matters so much—to you, to others, and to research. We’re truly better together.

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