Have you heard about the petition launched to the White House asking for all federally funded research to be freely accessible over the Internet? We’ve signed it and here’s why…
Today, government-funded research (that’s research paid for with your tax dollars) is often something you can have access to in published scientific journals, but for a charge. The petition is a call to action for the current Administration to make this research open to anyone who wants to read it — study participants, other patients, researchers, healthcare providers, industry, students, or anyone at all.
Under the Administration’s new “We the People” policy, if the petition gets over 25,000 signatures within 30 days, the White House will issue a response. At the end of day two, there are already over 10,000 signatures! (Anyone can sign, even those internationally.) You can read more about this open access movement and see what others are saying with the twitter hashtag #OAMonday.
Simply put, we believe this campaign represents the power of Openness. At PatientsLikeMe we’ve long believed in the power of open access and take steps to ensure many of our publications such as our recent epilepsy user survey, our lithium study in Nature Biotechnology, and most of our other published research is all freely available without needing to be an academic researcher. Why? Because patients like you want to read the most up-to-date scientific research and we believe you have the right to do so without impediment.
“In the UK, there’s a saying that e-patients have about their healthcare decisions: ‘Nothing about me, without me.’ There’s no better example of the disconnect between academic medicine and patients than a research study *about* patients that they can not read.”
- Paul Wicks, PhD, R&D Director, PatientsLikeMe (Signature #817)
“We call on patients, caregivers, family, and friends to sign this petition and send a clear message that life-saving research paid for with tax dollars is a public good and should be shared in the same spirit with which altruistic patients like you sacrificed their time, wellbeing, and sometimes even their lives.”
- Ben Heywood, President and Co-founder, PatientsLikeMe (Signature #4473)
“Some issues transcend politics and this is one of those. When you are sitting in a hospital trying to make a decision about yourself or a loved one, we believe you should not have to pay to access government-funded research results that could help you. Science is not done for universities or for scientists; it is done to better our understanding of medicine and disease to help you the patient. This research belongs to the public, to the patients who made it happen by volunteering and funding it with their tax dollars.”
This weekend, MIT is hosting the first H@cking Medicine conference and PatientsLikeMe is proud to be a sponsor. The hacking encouraged here isn’t malicious, rather, it refers to a passionate subculture of computer programmers who believe in sharing, openness, and innovation (among other things). Those are three concepts near and dear to us here at PatientsLikeMe.
The goal of the conference is to inspire new ideas and create new relationships so that everyone will leave invigorated and excited about improving healthcare. According to the H@cking Medicine website, “By using available tools in unconventional ways, we aim to revolutionize delivery of care, empower patients, and design new models of care. Typically, healthcare innovation is painfully slow and, even worse, often increases the cost. We can make a difference by creating cost-effective solutions without waiting for fundamental advances in science.”
To kick off the event on the first day, our own Jamie Heywood (keynote) as well as other leaders in the health care field will inspire audience members with ways to find and learn from the best use of openly shared data. The second day is dedicated to team hacking, and gives coders a practical look at what can be done with the available resources.
Read more about this subculture of hackers on Wikipedia and follow the H@cking Medicine conference updates on their website and Twitter.
“We are standing on the edge of a new information age, and this new information age is going to clash with our existing understanding of concepts such as privacy and how we think about healthcare data and what should be done with it.”- Jamie Heywood
PatientsLikeMe Chairman Jamie Heywood recently traveled to Zurich, Switzerland, to speak at the Personalized Medicine Symposium, sponsored by the Life Science Zurich Business Network.Tune in below for a video recap that features Jamie’s comments about rethinking the concept of privacy in order to personalize as well as democratize healthcare.“Humans are collectivists,” he argues.“We want to help each other.It’s intrinsic to human nature.”
Look for Jamie’s comments to begin around the 3:01 mark.
“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.
Posted by Lori Piscatelli Scanlon | April 13, 2011
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 to be lectured/made to feel bad;” second to that was fear of embarrassment (36%). What aren’t they sharing with doctors? Respondents said symptoms (41%), lifestyle information such as “diet, alcohol, exercise, or smoking” (39%) and failure to take a prescribed medication (29%).
Alternatively, the majority of patients who withheld information from an employer cite more practical implications. Sixty six percent (66%) of patients indicate the top reason as being “none of their employer’s business,” but nearly half (49%) say they are afraid of losing their job and about one-third (35%) are afraid of not getting a promotion. Finally, the individuals who kept certain health information under wraps from their health insurance companies report they did so out of fear of losing coverage (39%), fear of not having a specific treatment or procedure covered (39%) or fear of premiums going up (25%).
NOTE TO EDITOR: All poll results must be sourced as originating from PatientsLikeMe®.
Poll Methodology Between March 22nd and March 29th, PatientsLikeMe invited all members who had been active on the website within the past 90 days to participate in the PatientsLikeMe® Poll; 4,364 members completed the survey. Mean age of respondents was 49 years (SD 12, range 13-84).
About PatientsLikeMe PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]
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 status, I guess maybe in a way it is my subconscious defiance to my family’s fears.” – memyselfandHIV
Staying Active
“I imagine that by running the races I do, and talking to people about the benefits of a healthy and active lifestyle, that I might motivate a few people to become more active themselves. I mostly want people who like me have MS, but are still capable of being active, to know that it might help their symptoms and make them more comfortable.” – Ramilla
Making Lifestyle Changes
“I can’t drive under no means because where I live you need to be seizure-free for five years and I never am. So that’s a challenge having to depend on people or public transportation. Plus, where I work my co-workers aren’t as understanding as people were when I was a child.” – Blueeyedgoddezz
Tackling Challenges
“My biggest challenge of late has been to deal with my newly diagnosed diabetes. I am fortunate, because it was discovered in the early stages, so I’m doing quite well controlling my glucose levels. I’m learning to accept that there will be some high readings, rather than stressing over them, since my doctor is very pleased with my progress.” – Dirty Butter
Retiring
An interview with AlwaysLearning on her choice to retire from teaching.
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 (Patient Choices: The Shape of Sharing). Today, we’ll to take a look at how PatientsLikeMe has influenced the openness of patients like you.
In the poll, we asked if you had told more people about your condition as a result of PatientsLikeMe. 32% of you said yes, while 68% of you said no. Thus, roughly a third of you report that you have increased your level of openness due to PatientsLikeMe.
Those percentages change slightly when you break out the answers by condition. Nearly half of respondents with ALS/PLS/PMA (42%) and epilepsy (40%) have told more people as a result of people a member of our site, whereas approximately one in four people with chronic fatigue syndrome / ME (19%) and HIV (25%) have shared more.
So do these findings mean there’s an increase (or bias) in openness activity among the population? We’ll need to do more rigorous research to figure that out. According to Alan Westin1 of Columbia, a health social scientist who measures privacy trends among the general public, only 15% of people are “privacy unconcerned” meaning that they are willing to share their health information without fear of discrimination or retribution. The next 60% are considered “privacy pragmatists,” which applies to people who are willing to share some health information if the benefits are explained clearly and well understood. PatientsLikeMe may now appeal to privacy pragmatists because of the clear benefits shown from information sharing.
Clearly, social media provides a new method of disclosure, and patients like you everywhere must choose whether it’s right for you. Is it easier to tell people online instead of face-to-face? Are there more benefits than risks? And ultimately, is it better to be open or private? It’s up to you to make those choices for yourself.
We’ll close with a Mood patient’s experience of how using the site has helped to share more:
“Although I have not created a large number of posts on PatientsLikeMe (PLM), just the few posts that I created gave me confidence in explaining my condition and how it has impacted my life. PLM allowed me to explore others’ perceptions of their experiences: Knowing I ‘belonged’ here, and was understood here was valuable in my recovery. So being comfortable here, at PLM, made me feel more comfortable discussing my diagnosis away from PLM.”
REFERENCES
1. Westin, A. “Americans’ Changing Concerns About Health Privacy.” As presented at the National Academy of Sciences ceremony. 2008.
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? This was the focus of the poll. We asked you to answer this question across seven different networks, including your immediate family, extended family, neighbors, work/school peers, friends from childhood, current circle of friends, and friends/followers on social networking sites such as Facebook and Twitter. We then asked you how many of those people you’ve told (i.e., all of them, most of them, about half of them, a few of them, none of them, or does not apply to me).
The figure above shows you the response from almost 4,000 patients and gives you a sense of the “shape” of sharing in each disease. Each column represents your personal network (e.g., family); the colorful lines represent your condition (e.g., ALS); and the height of the line represents the mean degree of sharing within a network (e.g., all of them). So, do you see the lines close to the bottom of the chart? Those indicate that very few people in those patients’ networks have been told about their diagnosis.
So, what did we find? First, the most obvious finding is that you are most likely to share your diagnosis with all of your close family (81%), followed by your current circle of friends (51%) and extended family (43%). From there, you’d most likely tell your peers from work or school (29%), your “friends” or followers on social networks (22%), your neighbors (19%), and finally your friends from childhood (16%). When it comes to your childhood friends and neighbors, the results reveal that you are much more selective about who you choose to tell. In these categories, the majority (52%) of you indicate that you have told either “a few of them” or “none of them.”
Two conditions (HIV and Mood Conditions) are the least well known among all networks. For instance, overall results suggest that within a patient’s immediate family, 81% say “all of them” know about the diagnosis. However, in HIV, this figure is only 50%, and in Mood it’s 56%. The effect is even more pronounced with weaker social ties, such as neighbors; overall, 19% of respondents said that all of their neighbors knew their diagnosis; the same number was 4% in HIV and only 2% in Mood.
We didn’t only analyze the results by condition. What about age? We found that older patients were more likely to have told their neighbors or people at work/ school than younger patients.
Perhaps the richest data (still to be analyzed) is the open-text responses that we received about some of the positive and negative experiences you’ve had as a result of sharing their diagnosis. A positive example from a patient with ALS read:
“I was devastated and overwhelmed initially, but after reading reports of other ALS patients on PatientsLikeMe, I realized I was not in this alone and their comments were so encouraging. They encouraged me to share with others and share the triumphs/and bad days.”
A patient with HIV shared some of the risks behind making the choice to be open:
“There is still a massive stigma that goes with HIV. Disclosing can be incredibly difficult when it comes to who to tell and when. Too many still have major misconceptions about the disease and what it means for both the person that has the disease and the people around them.”
Thank you to everyone who took a few minutes to take our poll. Tomorrow, we’re going to look at what you said about how PatientsLikeMe has affected your openness.
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 the information to improve their products and services accordingly. In 2010, PatientsLikeMe further heightened the voice of patients by enhancing two existing products.
PatientsLikeMeListenTM and PatientsLikeMeLandscapeTM
These complementary services help measure both the frequency and sentiment of treatment discussions in our community forums. In 2010, we added functionality that allows our partners to see a longitudinal comparative view of patient sentiment (using PatientsLikeMeListenTM) as well as identify discussion topics that are rising within a forum (using PatientsLikeMeLandscapeTM ). Both products help to elevate patient concerns and bring their importance and relevance to life for industry partners.
Challenges
As a for-profit health company that enables data sharing by patients, we knew we’d face our share of challenges. 2010 was no different. Many groups, including patients, nonprofits, government and industry, had valid concerns about working with PatientsLikeMe because of our Openness Philosophy.
1. Guidance on Industry Interaction with Social Media
One of the main (and valid) concerns our industry partners express is that the Food and Drug Administration has yet to deliver clear guidelines on how to interact with social media. Dipping their collective toes into the social media wave pool is perceived as risky because the FDA levies severe penalties for companies attempting to directly sell to patients.
PatientsLikeMe has taken a leadership role in addressing this concern by further developing our PatientsLikeMeLeadersTM service. After investigating all privacy and regulatory conditions, PatientsLikeMe has created a fully compliant solution for direct industry-patient feedback in an online forum that we moderate. Now you as patients will be heard directly by those making decisions on what treatments are developed and how they are introduced, while our partners can learn what patients like you want and need – without fear of non-compliance.
2. Being Open About the Data Scraping Incident
In May 2010, we discovered that a major media monitoring company had created a patient account and automatically downloaded forum posts in order to add data to their sentiment analysis client service. Not only is that a violation of our User Agreement (“You may not use any robot, spider, scraper, or other automated means to access the Site or content or services provided on the Site for any purposes.”), but it reduces the trust patients have with our site.
We dealt with this challenge openly by disclosing our discovery of this “data scraping incident” the day it occurred. We sent a message informing all patient members, and about 200 patient members left the site as a result. In October 2010, The Wall Street Journal included PatientsLikeMe in its special series on the benefits and risks of sharing health information online, with the practice of data scraping highlighted as a risk to patients. We welcomed this article coverage and continue to engage with other leaders in this ongoing discussion.
Since our PatientsLikeMeListenTM product measures sentiment of discussions in our forums, we reminded our members about this similar service. We will continue to inform and educate our members about how we conduct business so there are no surprises.
Summary
In 2010, we continued to grow our patient communities and further confirmed that the success of our business lies in aligning patient and industry interests. In fact, we have recently been cited by the Board of Innovation as one of 10 Business Models That Rocked in 2010.
Because of the sensitivity of sharing health data online, however, we remain upfront, open and transparent about our business practices so that patients like you can be informed participants in your health, medical research and the development of effective treatments. Happy 2011!
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 are many ways to connect with other patients on PatientsLikeMe, ranging from communal conversation in our forums to direct one-on-one personal messages. While some of this dialogue is centered around sharing of health information and experiences, a part of it is purely meant as conversational discussion about everyday life. All of these interactions are important, because they help tie a community together. Here’s a glance at some of the ways you’ve connected:
Forum
You’ve created 1.2 million posts composed of 94 million words about 86,048 topics
21,865 of you have created at least one post, and 54,839 of you have viewed at least one post
You’ve marked posts as “helpful” 1.2 million times
Personal Messages
25,062 of you have sent a total of 751,668 messages
723 of you have individually sent over 100 messages
Patient Profile Pages
You’ve viewed our 80,000 patient profile pages over 15 million times
11,874 of you have left over 156,196 comments on other members’ profile pages
(Note: numbers are across all communities.)
While these numbers show just how much sharing has been going on, the following graph illustrates what the connections are like between our members. In this graph, the dots represent patients, and the lines between them connect any two patients who have shared at least 5 personal messages together. Note how many patients are interconnected. By reaching out to one another for support, conversation, data sharing and more, you’ve created a universe of dialogue that has never existed amongst patients like you.
Click for full-sized version. A graph showing personal messages made between some of the patients on PatientsLikeMe. The dots represent patients, and a line represents at least 5 personal messages between them.
Moreover, what you’re sharing with each other through these various connections represents the largest data set of its kind linking conversations to outcomes and overall health experience. This week on the blog, we’ll delve into some of these connections that have been spurred by some of our members. However, we also want to recognize that even the silent contributors (those connecting behind the scenes or outside of the forum spotlight) are as much to thank for this open network. All for one and one for all.
(About the title image. This graph shows all comments made between Epilepsy patients on PatientsLikeMe. The dots represent patients, and the lines between them represent at least one comment made. Note the highly connected network of patients in the center. Click for full-sized image.)
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.
As this podcast series about the PatientsLikeMe Parkinson’s quilt comes to an end, there’s no doubt that the story goes on. Thank you to all of my guests who have contributed to this first series, including PokieToo, Browncat, VigWig, Aunti J and Cher441. You’ve warmed and inspired us all with your pieces of this quilt.
Stay tuned for more of The Patient Voice in the coming weeks.
“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 patients just like her. In fact, she tells a compelling story about how she also found others who were experiencing compulsive disorder as a side effect of their PD and describes feeling as if a weight had been lifted off of her shoulders.
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 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. In the BNET article, the author cited our Privacy Policy, which indicates what data patient members can share on their health profiles at PatientsLikeMe. This is not the same as the data we sell. In addition to linking our partners site right off our homepage (where we list out the products sold to partners), we also call out “how we make money” on the front page. Part of this FAQ was cited, but the very important point about “personally identifiable information” is below:
How does PatientsLikeMe make money? We take the information patients share about their experience with the disease, and sell it in a de-identified, aggregated and individual format to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services. We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data. (Read more)
Is this a “privacy scandal”? To us, it’s not a discussion about whether or not health information should be private. (Don’t get us wrong – that’s an important discussion too, but we’re pretty clear on where we stand on that – see our Openness Philosophy). The issue here is that Nielsen was not given consent of the patients, nor PatientsLikeMe, to scrape information from our site. As we’ve said before, we believe this scraping incident was a violation of our User Agreement and a violation of patients’ trust.
Isn’t PatientsLikeMe doing the same thing as Nielsen? In addition to our User Agreement and Privacy Policy, we also have a moral obligation to our communities to do the right thing. In this case it means: 1) having this dialogue openly and honestly; 2) being selective about the projects we work on and our partners; and 3) contractually obligating our partners not to ‘re-identify’ our patients with our data or other data (which would mean a pharma company would be taking on liability using a service like PeekYou in conjunction with PatientsLikeMe data).
Our site wouldn’t exist if we had to “persuade” you, the patient, to share your data. Many of you find value in sharing; value in that level of openness. What you should expect in return is a level of transparency about what we will and won’t do with your information. We hope we do a good job of providing that transparency. What do you think?
“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.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
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Openness, Research 
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This weekend, MIT is hosting the first 
Patients Unveil Top Reasons Not to Share Health Information
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, 
Aunti J inherited her 
In response to the 
community, Vigwig’s online friends arranged for the quilt to be there waiting for him when he returned to his room from surgery.