Search Results for: sharing

Patient Sharing: A Concept That Is Finally Becoming Obvious

Susannah Fox, the Associate Director of the Pew Internet & American Life Project, recently posted a blog entry entitled “Peer-to-peer Healthcare: Crazy. Crazy. Crazy. Obvious.” that is near and dear to our hearts here at PatientsLikeMe. In her post, she defines peer-to-peer healthcare as follows: “Patients and caregivers know things — about themselves, about each other, about treatments — and they want to share what they know to help other people.  Technology helps to surface and organize that knowledge to make it useful for as many people as possible.” Sound familiar?  She goes on to describe where this idea of patients sharing knowledge with each other fits in the lifecycle of ideas (or The Natural History of a New Idea). “All of this research is moving peer-to-peer healthcare along the new idea scale.  In fact, I’m having fun watching people’s reactions (and mine) when I describe these new studies:  from indifference (bummer, they don’t get it), to puzzlement (OK, we’re at least up to ‘odd, but unproven’), to excitement (oh good, let’s talk). It speaks volumes to me that the Wall Street Journal covered the PatientsLikeMe [ALS] study, for example, and other major news outlets did not.” Want to hear why she thinks PatientsLikeMe and others …

Patient Sharing: A Concept That Is Finally Becoming Obvious Read More »

Patient Choices: The Shape of Sharing

In these days of Facebook and Twitter, the media is abuzz with news of “over sharing” of sensitive, personal or trivial information – everything from your current location to what you were up to over the weekend.  Members on our site may choose to share some of this, but what about some of the less trivial things in life, like your health information?  Is there such a thing as “over sharing?”  And what about your old “networks,” the ones that are now referred to as your “In Real Life” (IRL) relationships?  How much sharing do you do with them? For anyone with a life-changing condition, the choices you make in telling (or not telling) others about your diagnosis are a big deal.  There can be both benefits and risks to openly discussing your condition, whether it’s on a website, at work or amongst friends.  To find out more, we conducted a poll amongst 3,858 patients with 10 different conditions, including ALS/PLS/PMA (N=429), Multiple Sclerosis (N=436), Parkinson’s Disease (N=580), HIV (N=137), Mood Conditions (N=513), Fibromyalgia (N=1,031), Chronic Fatigue Syndrome / ME (N=129), Epilepsy (N=347), and Organ Transplants (N=256). How openly have you shared your diagnosis with various people in your life?  …

Patient Choices: The Shape of Sharing Read More »

One for All: A Cross View of Patient Sharing

With more than 82,000 patients on PatientsLikeMe, there’s a lot of information being shared with one another.  Last month, we highlighted how your sharing affects the experience of many on our site (One For All series). Today, we continue that theme by taking a look at information being shared across all of our communities that many of you may have in common. Can you guess how many of you are on similar treatments or experiencing similar symptoms even though you are in different communities? Read on to find out. DID YOU KNOW… Of the members who have reported their age, more than 8,000 of our of you have indicated you’re under 30-years old and more than 12,000 are 55-years old or older. Approximately 31% (or 27,013) of patient members across all communities experience depression. How are you treating your condition? You report using more than 4,500 treatments for your conditions, including prescription drugs, supplements, over-the-counter medications, medical devices, life-style modifications, therapies, etc. One of the top lifestyle modifications reported by our members is heat avoidance; and physical exercise is the #1 exercise cited. The most widely used prescription drugs reported across communities include Gabapentin (Neurontin), Glatiramer acetate (Copaxone) and Duloxetine (Cymbalta). The top 3 supplements …

One for All: A Cross View of Patient Sharing Read More »

Sharing and Learning with PatientsLikeMe

In December community newsletters (launched earlier this week), we asked some of our members to think about what they’ve shared and compared in 2010.  Below are highlighted answers from each interviewee across all nine community newsletters.  Thank you for your contributions. We also want to thank all of you who have contributed to the 90 newsletters we ran this year, including the newly launched ones in our Epilepsy and Transplants communities.  Finally, a special thanks goes out to our newsletter writer, Amy Morton, for pulling these together every month. To review all of our newsletters, you can visit our archives page here. * * * (Amy) How has PatientsLikeMe helped you learn and share this year? (Tommy Maker – ALS Community) PatientsLikeMe has provided me with new friends-people who are experiencing the same problems as I am. I’ve learned that there isn’t a single question that won’t get a vast myriad of answers from the community. I’ve learned that we’re all very different people, and I’ve learned we don’t always agree.  I’ve learned that we all care enormously for each other and are very eager to help those who find themselves in the same boat as we are. But most …

Sharing and Learning with PatientsLikeMe Read More »

It’s Official: Sharing Health Data Improves Outcomes

(Listen here to the PatientsLikeMeOnCallTM podcast on this topic) Last week the PatientsLikeMe R&D team published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR), the leading open access peer-reviewed journal on health care in the Internet age. The study aimed to find out direct from our users how they were using the site and whether the information they’d learned was helping to influence their interactions with healthcare providers, their decision-making, and ultimately their outcomes. Because JMIR is an open-access journal, you can download the whole paper for free here, but here are some of the highlights from the 1,323 patients that completed the survey: Almost all of our patients (94%, N=1,249) were diagnosed when they joined the site; an important factor in joining a community of “patients like me” The majority of members (72%, N=952) agreed that the site was helpful for learning about a symptom they have experienced (check out our symptom reports to see what they’re learning!) Many respondents (57%, N=757) agreed that the site had helped them to understand side effects of their treatments (check out our treatment reports to find out more!) and 42% (N=559) …

It’s Official: Sharing Health Data Improves Outcomes Read More »

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 …

Sharing, Openness…and Privacy? Read More »

Sharing Is A Right As Well

We do not live our lives alone. We live our lives in collaboration with others. We communicate our needs and our goals, and together we work to achieve them. This is exceptionally true for families and individuals dealing with illness. Whether you’re dealing with depression, or pain, or perhaps the fear and stigma of HIV, or the impairment that comes from MS, Parkinson’s or ALS, what helps us the most is when those around us reach out and share their support and advice. You would think that your ability to share would be as much your right as speech, but is it? It’s not clear that is true in healthcare today, nor is it clear that such a right will be protected tomorrow. Privacy is also a right – a right to not share what you do not want shared. It’s a fair and just expectation that the doctors and clinicians you employ to support you in your illness will not share your information without your permission. Today, I fear that privacy has become much more than a right; it has become a goal. When that happens, people begin to find ways to make it difficult to share in the …

Sharing Is A Right As Well Read More »

Sharing to Feel Better

Sharing.  It’s a concept we all learn at a very young age.  Oftentimes reminisced as happening in the sandbox, we think back to our young selves giving up what we hold most dear (in this case, some cheap plastic toy) to allow someone else to benefit from it.  It seems so simple and obvious, but how many toddlers do you know that immediately give into the concept…easily handing over that toy without a moment of hesitation or a slight tug back or possibly the more extreme screaming tantrum?   Over time, what happens is that the more they share, the more they see it puts a smile on their friends’ face, or gives them something in common to “chat” about. You don’t need to be clairvoyant to see where I’m going with this.  Sharing is at the core of PatientsLikeMe, and it’s what makes our communities so special.  More than 32,000 patients are online sharing something they hold dear — details about their health — so that others can see it, learn from it, and dialogue about it.  It’s truly inspirational and something we believe is transforming healthcare as we know it. But sharing doesn’t have to stop there.  From a …

Sharing to Feel Better Read More »

A new gene for ALS: What sharing your genetics could mean for research

In today’s issue of the journal Science two papers describe the discovery of a new gene for ALS (you can read the abstracts here and here). Around 90% of ALS cases are sporadic, i.e. we don’t know what causes them, but for 5-10% of patients the disease runs in their family (known as familial ALS, FALS). Until today, there was only one major causative gene that we knew about, called SOD1, which accounted for 20% of familial cases. Today’s new discovery of the gene FUS (also known as ALS6) accounts for an additional 3-5% of familial cases and was the result of an international collaboration between scientists in Boston, London, and Sydney. This is very exciting for research because the more we know about what causes ALS, the better our chances of finding an effective treatment through better understanding of the pathways involved in motor neuron degeneration. Here at PatientsLikeMe, we’ve recently upgraded our ALS platform to capture data on familial ALS patients’ known genetic mutations. The goal is to help familial ALS patients find another patient like them, and to enhance understanding of the phenotype of each mutation, e.g. if different types of mutation cause a faster or slower …

A new gene for ALS: What sharing your genetics could mean for research Read More »

10 Things You Need to Know About Living With a Mental Illness

Going to therapy or talking with friends or family about things like anxiety, depression or PTSD, was once considered taboo. But, mental health has increasingly become a more widely accepted topic of discussion. In 2018, the American Psychological Association found that 87% of American adults agreed that having a mental health disorder is nothing to be ashamed of. They also found that 86% said they believe that people with mental health disorders can get better.  While people are becoming more open about mental health, there are many things that people still aren’t talking about. Like the fact that 33% of Americans didn’t consider anxiety as a mental health disorder and 22% said the same about depression. Another 39% of people said they would view people differently if they knew that person had a mental health disorder. Based on findings, the stigma of mental illness is still a prevalent issue. Stigma happens when one person views another as different or “other”. People who are placed under a stigma are often denied full social acceptance, viewed as having negative attributes, and tainted or discounted.  What To Know About Mental Illness? Talking about mental illness means going beyond the Diagnostic and Statistical Manual of Mental Health Disorders (DSM-V) …

10 Things You Need to Know About Living With a Mental Illness Read More »

Scroll to Top