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Share and Compare: What Have You Learned with InstantMe?

How are you feeling today – honestly? In December, PatientsLikeMe launched a new feature called InstantMe. It’s designed to allow you to chart how you are feeling day in and day out. Is today a bad day? Record it on InstantMe (found on your profile), and if you’d like, add a note explaining what’s going on. With InstantMe, patients like you are able to learn about your day-to-day fluctuations in response to your symptoms, treatments and many other things, such as family stress or work issues. More than 13,000 of you have been using InstantMe for a little over three months. So, what have you gleaned from it so far? Here’s a sampling of the feedback you’ve shared. I really like Instant Me because I see that I am feeling better than I thought and noticed the weather really has an effect on me. I’m more aware of the changes that have occurred since I had the CCSVI procedure. And using this new InstantMe has let me chart this almost on a daily basis. I can record when and why I feel the way I do, like if I am trying a new supplement and such, or forgot to take …

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Share and Compare: The Launch of Two Medications

The launch of a new medication can be a very exciting event.  It can renew hope for a better future and provide proof of the billions spent on research every year.  It can also stimulate a lot of interesting conversation. Or not.  We’ve learned from you that not every new medication warrants your attention and discussion.  What’s fascinating is learning which ones do and which ones don’t, and why.  We saw a recent example of this on PatientsLikeMe: (In this chart, the medications are called “A” and “B” so, as we continue to observe and research dialogue about these medications, we will not have influenced you in any way.) This chart shows the volume of conversation about two new medications that were approved by the FDA to treat the same disease.  We studied the time immediately following FDA approval of each new medication to see whether or not patients were talking about them.  Since the drugs were approved at different points in time, we simply shifted them onto a single timeline for head-to-head comparison. What a difference!  In the first month following FDA approval, you discussed Drug A 67 times but Drug B only 25 times.  Three months later, the …

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

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 …

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

The 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) …

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Share and Compare: Be a PRO! Understand Your Experiences in Context

This week on our blog, we’ve been highlighting how patients like you are putting their experiences in context.  With the launch of InstantMe and some of the design updates you read about, you can see we’re listening to your call for more functionality that lets you understand how your condition affects the whole you. Patient Reported Outcomes (PRO) questionnaires are a great tool to illuminate the physical, mental, and social dimensions of your overall health. In fact, PROs are increasingly used in clinical trials, and in December 2009 the FDA approved the use of PROs to support product claims. Best of all, PROs are free of clinical interpretation, which empowers you, the patient, to have your voice heard in the real world. PatientsLikeMe is an unparalleled platform for electronic PROs, which have a few advantages over traditional pen-and-paper ones, such as: Patients are more likely to share and share truthfully using electronic interfaces; Researchers have real-time access to the data; Electronic PROs enable alerts for specific concerns (such as adverse side effects), ensuring better safety for all patients (1). Early on in our partnership, our colleagues at the biopharmaceutical company UCB proposed a longitudinal PRO survey: members of our Epilepsy …

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Share and Compare: From the mouths of patients

As we round out our “Share and Compare” week, here are a few quotes that some of our members have shared regarding the impact of being able to see where you fit in. You’ll read in the quotes how patients like you can find solace in the fact that there are others out there experiencing the same thing;  you’ll see how your sharing is helping others make sense of their treatment dosages; and you’ll feel through these quotes how personal sharing can be within a community like ours.  Behind all the graphs and charts we’ve shared this week are people – here’s what they have to say. Stay tuned next week for a few follow-up pieces on Share and Compare, as well as a new topic series.  Have you learned from sharing and comparing?  Add a comment below, post in the forum or connect with us through private message inside the site. – – – “It’s so nice to share information with others who are experiencing the same thing. The most frustrating thing I remember as a teenager was when doctors couldn’t explain exactly what was happening to me or why. I used to feel as if I did something wrong and …

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Share and Compare Your Health Experience

“I want to know if what I’m going through is normal for a patient like me.” This is a sentiment we’ve heard from so many of you throughout our communities.  This week, we’re focusing our blog on some of the ways we’re trying to help you put your experiences in context.  It’s a concept we like to call “share and compare.” From a design standpoint, we’ve been focusing on how to help you see how your status relates to other patients with the same condition.  By showing where you fit within a larger group, you can begin to see if your experiences are typical.  The more data you share, the more you can compare your experience to others. Here are some of the changes we’ve made this year along these lines, as well as the benefits to patients like you: Treatment pages: Now you can view the most commonly prescribed treatments for your condition and see where you fit in with the treatments you’re taking.  Want to see if the dosage you’re on is in line with others?  Now, you can.  (You can also use this to discuss dosage questions with your doctor) Individual treatment reports: When you view a …

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

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.”  Want 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 …

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2 immunotherapy treatments in the news: Imfinzi and Keytruda update

Two immunotherapy treatments — Imfinzi (durvalumab) and Keytruda (pembrolizumab) — have made headlines recently in relation to lung cancer treatment. What’s the latest? Here’s an update. Expanded FDA approval for Imfinzi The U.S. Food and Drug Administration (FDA) first approved Imfinzi as a bladder cancer treatment in 2017. Imfinzi is marketed by AstraZeneca. In February 2018, the FDA approved Imfinzi for some lung cancer cases — specifically for patients with “stage 3 non-small cell lung cancer [NSCLC] who are not able to be treated with surgery to remove their tumor, and whose cancer has not gotten worse after they received chemotherapy along with radiation (chemoradiation),” the American Cancer Society (ACS) explains. A few more details on Imfinzi, according to the ACS: The goal of treatment with this drug is to keep the cancer from getting worse for as long as possible (researchers call this “progression-free survival”). The new approval for Imfinzi was based on a randomized clinical trial of 713 people, which found that those who received the drug had an average progression-free survival of 16.8 months compared to 5.6 months for those in the trial who did not receive it. Imfinzi is a “checkpoint inhibitor” drug that targets and blocks the PD-L1 protein to …

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“You’re the only expert of your own life and your own body.” Author Nilofer Merchant shares why she featured PatientsLikeMe in her new book

“Onlyness. It’s not a word in the English dictionary, but it should be.” We sat down with author, TED Talk speaker and innovator Nilofer Merchant to talk about her new book The Power of Onlyness, and the role that the PatientsLikeMe story plays in it. Advocating for “Onlyness” Nilofer has been championing the idea of “Onlyness” since 2012, when she first introduced the term in her Harvard Business Review-published book 11 Rules for Creating Value in the Social Era. “Onlyness” is the idea that “each of us, every single one of us can add value in the world. Not just the credentialed people, not just the educated people, but each and every single one of us. “The young, the sick, the neglected – these are not typically the people whose ideas are heard.” She says. “Most often, whether ideas are considered or dismissed is based on who contributes them, and how powerful their sponsors – not the ideas themselves – are.” Raising a collective voice Nilofer studied over 300 examples of companies bringing “Onlyness” to the forefront and chose 20 to feature in her book, including PatientsLikeMe. “PatientsLikeMe is allowing the levers and power systems to benefit the user,” she says. “It’s also …

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