Openness

PatientsLikeMe® Poll Reveals Patients Share Health Data Online Prefer to Keep Quiet With Doctors, Employers

Patients Unveil Top Reasons Not to Share Health Information CAMBRIDGE, MA–(Marketwire – April 13, 2011) – According to a new PatientsLikeMe® Poll, almost one in three (29%) patients have withheld certain health information from their doctor. Of the 4,364 poll respondents, all of whom are members of PatientsLikeMe’s online health data-sharing community (www.patientslikeme.com), nearly half (47%) indicate that they have chosen not to share certain health information with an employer, while 14% have withheld information from insurance companies. “Here’s a population of arguably the most open patients, who share detailed data about everything from their treatments to their sex lives on PatientsLikeMe, and yet some of these individuals feel uncomfortable sharing with other stakeholders in healthcare,” says Jamie Heywood, co-founder and chairman of PatientsLikeMe. “If we’re all going to make healthcare better, then it’s time we really understand what’s keeping patients from sharing information. That insight is crucial to improving the system.” In their poll responses, patients also identified some of the reasons why they chose not to share their health information. Patients’ unwillingness to share certain information with doctors is driven by more emotional triggers. Almost half (44%) say they didn’t tell a doctor about something related to their health because they “didn’t want …

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Patient Choices: The Deciding Factors

In a recent series on patient choices, we’ve highlighted a lot of the decisions patients like you have to make on a daily basis.  A few weeks ago, David S. Williams kicked off the series with a blog about the treatment and career decisions that patients like you, and his mother, have made.  Kate Brigham then highlighted examples of the social and emotional tradeoffs you make every day.  Last week, we published the results of a recent patient poll where more than 4,000 of you answered questions about the choices you’ve made to tell (or not tell) others about your diagnosis.  (See “Patient Choices: The Shape of Sharing” and “Patient Choices:  How Open Are You Now?“) Today, we continue the series by highlighting examples of the choices patients like you have made in the past twelve months (pulled from 2010 newsletter interviews). Patient Choices About… Being Open “I decided to make my profile public with the hope that something I have experienced, have done, or could say may help someone else along the way. Because my family seems to still live with the stigma of HIV/AIDS and prefer I don’t allow others close to our family to know of my …

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Patient Choices: How Open Are You Now?

At PatientsLikeMe, we have a Privacy Policy that explains what we do with the health data that patients like you share.  But as many of you know, we also have an Openness Philosophy, which outlines what we believe are the substantial benefits of being open versus private about your condition.  Here’s an excerpt: “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 healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.“ But what do you think about openness?  We realize this is a personal decision that you have to make not only as a member of PatientsLikeMe, but also as part of your everyday life.  Yesterday, we delved into the results from a recent patient poll on how openly you share your diagnosis with various people in your life …

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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?  …

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Aligning Interests: A PatientsLikeMe Year in Review (Part VII – Business Development)

2010 was a strong year for business development at PatientsLikeMe.  Our goal was – and continues to be – to align patients’ needs with industry interests in order to maximize interaction between the two.  Here are a few of our successes and challenges over the year. Successes 1.  New Partnerships, New Communities In the first quarter of 2010, PatientsLikeMe launched two communities with corporate partners.  UCB helped us develop our Epilepsy Community, while Novartis partnered with us to create our Transplants Community.  Both communities have grown to more than 3,000 patient members and are now the largest of their kind in the world. As with all of our partnerships, we made sure the focus is on the patient experience.   For example, what are your perceptions about the medications you take?  How do you see these treatments impacting your quality of life?  Getting quantifiable data on such questions can help our partners understand how they can help patients like you improve your health outcomes. 2.  Enhanced Services for Partners When we create products and services for our corporate partners, it’s with a single objective:  to amplify the patient voice.  As a result, healthcare companies who wish to improve health outcomes have …

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One for All: The Connected Community of PatientsLikeMe

PatientsLikeMe is dedicated to building a platform for the open sharing of personal health data.  So far, our community of patients have shared over 600,000 outcome surveys, 300,000 treatment histories, and 2.3 million symptom reports.   We believe this enormous collection of health data will dramatically improve how patients manage their conditions. But there are more benefits to joining a community of patients like those on PatientsLikeMe than just sharing data: the social support from interacting with other patients has a real effect on improving patient outcomes.  In a recent study published in the Journal for Medical Internet Research (JMIR), our research team found that nearly half of survey respondents (n = 559, 42%) agreed that the site had helped them find another patient who had helped them understand what it was like to take a specific treatment for their condition.  Furthermore, the survey shows that those patients on PatientsLikeMe who make close relationships with other members receive significantly more benefits from those who do not. So it is worth taking a moment to look at just how extensive the social connections are on PatientsLikeMe, and how many patients have reached out to other patients and helped improve their lives. There …

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The Patient Voice | Episode 5: A Little Elbow Grease and a “Can Do” Attitude

I don’t think about what I can’t do, I think about what I can do.  – Cher441 Over the past month, we’ve heard several stories about how PatientsLikeMe Parkinson’s Disease community members came together online and made a quilt that has traveled all around the world providing warmth, comfort and a sense of unity for each of its recipients. So where is the quilt now and what is it being used for? I recently sat down with member Cher441, who currently has the quilt. An advocate for raising awareness about Parkinson’s, Cher441 is involved with many support groups including, The Courageous Steps Group, The Parkinson’s Disease Bootcamp group, The Ohio Parkinson Foundation Northeast Region group, as well as several other local awareness groups near her.  Recently, The Courageous Steps and Parkinson’s Disease Bootcamp groups hosted events where Cher441 brought the quilt for everyone to see. Being a member of so many groups didn’t come easy to Cher441 in the beginning and she credits the connections she has made through PatientsLikeMe as the kick-start for her involvement in everything else.  Listen in to my conversation with Cher441 about how she has been using the quilt to raise awareness about Parkinson’s Disease. …

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The Patient Voice | Episode 4: Weaving An Inheritance

“I’ve had Parkinson’s for 15 years, and I feel like I can help people more by being vocal than I can by being quiet.” -Aunti J Stand up and shout! Episode four of our new podcast series, “The Patient Voice,” is here!  For our next interviewee, meet Aunti J.  Like many others who contributed to the quilt, Aunti J wasfeatured in her local newspaper. She was proud to be raising awareness of Parkinson’s disease (PD) on behalf of all those represented through their patches on the PatientsLikeMe PD community quilt. Aunti J inherited her PD and has been living with it for most of her adult life.  While she has plenty of first-hand experiences with PD, she has also been a caregiver for someone with the disease – her father.  A wealth of knowledge with a big heart, Aunti J makes it a point to share as much as she can about what she has learned. When her father passed away, she came online looking for support and an opportunity to share with others.  The PatientsLikeMe PD community is thrilled that she found us! With more than 200 patients with inherited PD on PatientsLikeMe, Aunti J was able to find …

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What Data Do We Sell? A Continued Discussion about “Data Scraping”

In response to the Wall Street Journal article published last week, we’ve had a lot of great discussions about the role of honesty and transparency. Transparency is about you – members of the PatientsLikeMe community – knowing how we make money and what we do with the data you’ve entrusted to each other and PatientsLikeMe. To continue the dialogue, we’re writing this blog to respond to a few recent articles that have suggested we do something other than what we’ve said.  See BNET’s “PatientsLikeMe Is More Villain Than Victim in Patient Data ‘Scraping’ Scandal” and Internet Evolution’s “Personal Data Mining: Government & Business Share Blame” (since corrected). To start, the characterization as villain is nicely hyperbolic for a headline, but inaccurate.  Villains are dishonest.  As a company, we strive to be honest and transparent – both are key parts of our Core Values as an organization.  To that end, let us dig in on a few of your recent follow-up questions: Does PatientsLikeMe sell our identifying data (like name, photo, bio, etc.)? No. We’ve asked for a correction in the Internet Evolution article because their statement about scraping the names you use to sign up for the site is incorrect. …

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The Patient Voice | Episode 3: When a Community “Becomes Family”

“I’ve met a lot of people from all over the world, we are all one happy family.” – Vigwig Around and around we go, strap on in for Episode 3 of our podcast series, “The Patient Voice.”   To continue with the PatientsLikeMe Parkinson’s Disease (PD) quilt story, our guest today is community member VigWig. A few years back, VigWig underwent surgery for DBS (Deep Brain Stimulation). As word spread throughout the community, Vigwig’s online friends arranged for the quilt to be there waiting for him when he returned to his room from surgery. Inspired by his Parkinson’s “family” (as he calls them), VigWig plays a more active role in the PatientsLikeMe PD community, and in raising awareness about PD. His story was published in the The Courier of Montgomery County, and VigWig submitted quilt patches to Parkinson’s Quilt Project (coordinated by the Parkinson’s Disease Foundation and displayed at the World Parkinson’s Congress). An honest-to-goodness story about an online “family” rallying together to support one of their own…here is our interview with VigWig.

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