Search Results for: openness

PatientsLikeMeOnCall™: “A Look Ahead” at Openness in Healthcare (Episode 4)

“I think we can see there are a lot of ways where openness can be powerful.  What’s necessary is to help facilitate openness and reduce the barriers to sharing medical information.” – Ben Heywood PatientsLikeMe Co-Founder Ben Heywood has blogged previously about openness and sharing – and how important they are for patients. In this edition of PatientsLikeMeOnCall, he talks about the progress we’ve made in achieving openness within the healthcare industry and his vision for the expansion of the patient voice. How can we put patients back at the center of healthcare? What barriers do we need to break through so that patients like you can openly share your health information?  Ben answers these questions and more in the fourth and final episode of our “A Look Ahead” podcast series. Tune in to Ben’s full interview here: Podcast Powered By Podbean Did you miss any of the first three episodes?  Find them on our blog or iTunes page.

PatientsLikeMe in Wall Street Journal: Transparency, Openness and Privacy (cont’d)

Journalist Julia Angwin of the Wall Street Journal just published an article describing how a major media monitoring company, Nielsen BuzzMetrics,  scraped our forum last Spring.  (See my previous blog post on the incident – “Transparency, Openness and Privacy”) Julia’s piece includes details regarding how this incident happened, how we (and you) responded and more.  We are very excited about this article.  Having a rigorous debate about transparency, openness and privacy is critical to us achieving the trust we want to have with you, our patients. What Nielsen did was clearly a violation of our User Agreement.  However, we believe this incident (and this article) have spurred an important ongoing discussion about what is right, just and appropriate regarding how companies operate in this new networked world.  As I said to Julia, this is a new frontier.  We also believe there’s a lot for everyone to learn from this experience, especially around how to put patients first. Read Julia’s piece and tell us what you think.

Will Openness Bring About a Breakthrough?

Share your thoughts in an innovative online event with our partner Myelin Repair Foundation. Our Openness Philosophy is centered around the idea that patients sharing their real world health data allows for collaboration on a global scale; that it will accelerate new treatments; and that it can change our health care system.  In this same spirit of openness, The Myelin Repair Foundation (MRF) has recently announced a new collaborative event. This fall MRF is inviting scientists, industry experts, patients, policy makers, and other big thinkers inside and outside of the medical research enterprise and health care industry to two online “idea sourcing” events called “Breakthroughs to Cures”. These events are designed to explore creative ways to accelerate the pace of medical research and shorten the time to market for new medicines for all diseases. The two events will take place respectively on October 7-8 and November 9-10  and there will be as many as 600 individuals from a wide range of backgrounds in online conversation threads that are expected to identify new strategies for accelerating research.  Here is a chance for patients to come to the table, contribute your ideas, your experiences with illness, and your sense of urgency to …

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Transparency, Openness and Privacy

The following message was sent this morning to all members of PatientsLikeMe.  Please read what we have to say about openness, sharing and its privacy implications and join the conversation. **** Dear PatientsLikeMe Members, What are the privacy implications of sharing in this open, online community?  We talk a lot about this and, as a company, strive to be transparent about the risks and rewards to sharing here.  Two recent events have prompted me to reach out to all the members of PatientsLikeMe to ensure we all understand openness, sharing and its privacy implications. The first event happened last month when a patient asked us to remove all the data on his/her profile from the system.  The member wrote: “The reason I’m leaving is I feel I didn’t fully understand the privacy impact of having all my health information for practically anyone in the world to see.” We rarely receive a request like this, but since receiving this one, I have thought about it every day.   We do not want anyone to be surprised by the impact of sharing data on PatientsLikeMe.  We believe in openness, but we also want people to knowingly make the choice to be open with …

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Sharing, Openness…and Privacy?

Every so often, we sit down to try and make our business objectives clearer to our patient communities.  Why?  Well, we can’t have a business without you and our communities can’t exist to help patients without a business. This often results in our Privacy Policy and User Agreement being updated to help clarify our goals and objectives.  One of our company’s core values is transparency, which means we never want to surprise you.  Our site wouldn’t be what it is today if we didn’t honor the trust you put in us.  Because of that trust and our values, we want you to understand what our Privacy Policy means for you and make sure it clearly states what we’re doing with your information as a business. So, what has changed about our Privacy Policy?  Well, the short answer is not much – but if you haven’t read it in a while, it will read differently (and hopefully much clearer).  As you know, we talk very openly about how we encourage our paying customers to partner with our patients (check out our Read This! section) to better serve your needs. The latest changes to the Privacy Policy reflect what we have always …

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To spit or not to spit (openness gets personal)

Over the past seven months of working at PatientsLikeMe, I’ve come to think that the idea of sharing medical and health information is completely normal. Since giving birth to my nearly 3 year old daughter, I have continued to be eternally grateful to other mothers who have willingly and openly shared their deeply personal experiences and advice so readily. There are some unexpected things you have to deal with, and nothing is so helpful as the wisdom of others who’ve been there. Then this December, I had a moment of pause. All of us at the company received a year-end gift of 23andMe‘s Personal Genome Service. Here was my chance to find out what my genes have in store for me and to find out what I might have passed onto my little girl. But do I really want to know? And once I find out, do I want share that information? Well, it took a while to decide and I hadn’t expected that. I realized that deciding to put very personal details about my health, current or future, out into the world is no small thing. I commend each and every person who has chosen to share their information …

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The Value of Openness

Welcome to the PatientsLikeMe blog. Here you will get firsthand accounts of our growth and how we are impacting global health care. Why have we chose the name “The Value of Openness”? Read our Openness Philosophy below, and you’ll see why. ________________________ Openness is a good thing. Most healthcare websites have a Privacy Policy. Naturally, we do too. But at PatientsLikeMe, we’re more excited about our Openness Philosophy. It may sound counterintuitive, but it’s what drives our groundbreaking concept. You see, we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible. At PatientsLikeMe, we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system. Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the …

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Family activities with a health condition

Your chronic health condition may steal your energy, but it shouldn’t rob you of family fun. Jeanette Alston-Watkins was diagnosed with lupus (SLE) when her kids were 11 and 14. Check out this Q&A about activities she enjoyed with them despite SLE. Try some of these with your children or grandchildren over the upcoming holiday break! (Check out more of Jeanette’s story and perspective on parenting with lupus.) What are some activities you did with your kids when you were fatigued or weren’t feeling well? When the kids were growing up and I just was exhausted to the point where I could only make it to the couch, we would play board games, video games or card games. Sometimes, I would make them read to me or I’d read to them. If I was really hurting, I would have them cook for me, and I would watch them add the ingredients. It taught them how to cook, while helping me out without them even realizing. Easy, relaxing things that wouldn’t aggravate any symptoms was the way to go for me. (See some of Jeanette’s favorite recipes that work well with her lupus.) And what kinds of activities did you and your family …

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Prevention of Parkinson's Disease - Parkinson's Freezing

Parkinson’s Freezing Triggers and Fall Prevention

Gait freezing and falls are common among people with Parkinson’s disease (PD). Take a closer look at patients’ experiences, common triggers of freezing and tips that may help prevent falls. What is known about freezing and falls? Researchers and movement experts have been studying gait freezing in people with PD for several decades. The exact cause of freezing is unknown, but experts believe it’s caused by PD’s effects on parts of the brain that control motor movement, such as the basal ganglia or part of the right side of the brain. Common triggers of gait freezing may include: Crowded environments or tight spaces Turning corners, going around furniture or objects, or changing direction Entering doorways, crossing over thresholds (especially from outdoors to inside), or changes in flooring (for example, from tile or wood to carpet) Distraction or multi-tasking, such as walking and talking or carrying objects Anxiety (initial research shows that this common symptom in people with PD may play a role in freezing, but further studies are needed) Some tips and tricks may help “thaw” episodes of freezing (but every person is different, so talk with a movement specialist or physical therapist about what might work for you): Visual cues — Giving yourself a visual hint …

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Healthcare = hot election topic. Check out some Election Day basics

Ready to cast your ballot? Election Day is almost here and recent polls show that healthcare is one of the top issues on voters’ minds. Here’s some quick election-related info for you. Election Day and voting basics – Tomorrow (November 6, 2018) is a general election for most states, except Louisiana (where November 6 is a primary and December 8 is a runoff general election). You can search for your polling place here. Learn more about voting in general, as well as voter accessibility laws for seniors and people with disabilities, and absentee voting info for military families and overseas U.S. citizens. Seats up for grabs – Candidates are vying for all 435 seats in the U.S. House of Representatives, 35 (of 100 total) U.S. Senate seats, 39 governor spots, and a number of state and local public offices. See who’s running for Congress in your state, and look into their stance on healthcare and other issues that matter to you. Pre-existing conditions=top issue – A spring 2018 poll by the Kaiser Family Foundation (KFF) found that healthcare was a top issue for 22 percent of registered voters. More recently, a September poll found that healthcare is a top issue for 27 percent of voters. “KFF polling continues to find pre-existing conditions as a widespread concern and with the impending lawsuit …

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