10 posts tagged “privacy”

Attending Partnering with Patients…as a Patient

Posted March 14th, 2013 by

Last Friday we heard from PatientsLikeMe Head of Community Liz Morgan about her experiences at the Institute of Medicine’s Partnering with Patients workshop.  Today we hear from multiple sclerosis (MS) patient Laura Phillips, a PatientsLikeMe member who spoke at the event. 

As a speaker at the workshop, Sally Okun, PatientsLikeMe’s Health Data Integrity & Patient Safety Director, invited me to speak for the patients of PatientsLikeMe as her co-presenter.

IOM Workshop - LadyMac

I had everything worked out to exactly what I wanted to say and right in front of me so I wouldn’t forget, but I couldn’t tell you what I even said. LOL.  I know I didn’t want to look down and read, it needed to come from the heart and what I could remember.  I thought I’d freeze and not be able to say a word, but after introducing myself I felt really comfortable with looking at the audience and speaking.  Even with Liz Morgan, Head of Community at PatientsLikeMe, taking pictures, I was able to talk.

There was a large, diverse group of people attending and presenting. I wish I could do a better job of portraying the event, but it was large. Healthcare, patients and families were the subjects of the workshop. Lots of ideas were put forth on everything from how to improve the healthcare system to how to make patient records available to the patients electronically, such as recording doctor visits and putting them on a CD for the patient to keep and play for other family or friends who were not at the appointment.

Recording doctor visits is something I’d love to see. How many times have you left the doctor’s office and each person present remembers the visit differently? Or you can’t remember if you discussed a particular test or not?  I did push the importance of the patient keeping hard copies of ALL tests, doctors’ notes, you name it, get a copy.  I would love to see the ability of viewing my records electronically so I could view my results quicker, make notes to ask the doctor, etc. There was also talk of submitting questions for the doctor in advance for the doctor to review and be more prepared for the visit. Also, the staff would print a copy of your submitted questions so you would have it in hand and remember what to talk about.

There was way too much to compress into a brief review of the event, but there were a lot of really good, logical ideas presented.  How many of the things discussed will eventually become a reality? Only time will tell. Privacy will be a major roadblock I fear.  Everyone that I heard talk did agree that collecting data from the patients themselves was important, and PatientsLikeMe was mentioned more than once by others there.

IOM Workshop - Sally and LadyMac Closer

Sally and Liz were a delight to meet and spend time with, as we are all passionate about PatientsLikeMe and how it has helped many of us through the years.   Really had a great time, and I wish I could have spent more time with Sally and Liz, but the time we did spend talking was productive and invaluable.


How Privacy Impacts Personalized Medicine

Posted September 27th, 2011 by

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.


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

Posted April 13th, 2011 by

screen-shot-2011-04-13-at-123447-pmPatients 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%).

The complete PatientsLikeMe® Poll results can be downloaded here.

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]

PatientsLikeMe member lscanlon PatientsLikeMe member dwilliams


Patient Choices: How Open Are You Now?

Posted February 23rd, 2011 by

youAt 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.

chart05

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.”

PatientsLikeMe member bheywood PatientsLikeMe member dwilliams

REFERENCES

1.  Westin, A.  “Americans’ Changing Concerns About Health Privacy.”  As presented at the National Academy of Sciences ceremony.  2008.


Patient Choices: The Shape of Sharing

Posted February 22nd, 2011 by

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).

chart04b

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.

PatientsLikeMe member pwicks


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

Posted October 21st, 2010 by

ThiefIn 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. 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?

PatientsLikeMe member bheywood PatientsLikeMe member jamie


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

Posted October 11th, 2010 by

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.

PatientsLikeMe member bheywood


A Year in Review: PatientsLikeMe in 2009

Posted December 31st, 2009 by

As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year.   Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months.  Wishing you all a Happy New Year!

Community Milestones
This year, the 15+ disease communities at PatientsLikeMe became an online home to more than 50,000 members.   The fibromyalgia community was expanded this past fall to include patients with chronic fatigue syndrome, and we announced a new community scheduled to launch early next year for people with epilepsy.  In addition to celebrating our communities’ awareness days and months within the site and right here on the blog (including Fibromyalgia Awareness Day, MS and PD Awareness Months, National HIV Testing Day and World AIDS Day), many of img_8741-300x225our members also participated on PatientsLikeMe teams in walk/run efforts to raise awareness and money in the name of their disease.  Congrats to the 40+ teams walking at events to support non-profit organizations like ALS Association, National MS Society, NAMI, Parkinson’s Alliance, APDA, and the MS Society of Canada. The real-time sharing and learning happening on PatientsLikeMe was also highlighted in the report series called The Patient Voice (starting with inpatient therapy for people with Mood conditions).  Check out highlights from all these programs on these videos from the Fibromyalgia, Parkinson’s, Multiple Sclerosis and Mood communities.

Many of our members have also become fans of PatientsLikeMe on Facebook.  Here are a few quotes posted to our Facebook page in ’09:

I find this site so beneficial in looking for the tools to cope with the disease. People post research and real-life patient experiences of current trials and treatments. Hope is a major focus of PLM and I encourage others to join. We are strong in numbers and we have a voice.”

“PLM is a wonderful way to express what and how to live with this disease. It has changed my life for the better, have met wonderful individuals and we have shared, cried and grown by reaching out and expressing from our hearts, have made wonderful friends and have learned so much.”

Research Updates
If you haven’t checked out our research page or subscribed to Google Scholar alerts (92 articles referred to us in 2009!), here’s what you’ve been missing…

This year our ever-growing research team continued their analysis of the real-world data being shared by patients like you.  Awarded the inaugural JMIR award at Medicine 2.0, the PatientsLikeMe research team published pieces on compulsive gambling in patients with Parkinson’s disease in Movement Disorders, expanding the gold standard rating scale in advanced ALS in European Journal of Neurology, and “The power of social networking in medicine” in the highly respected journal Nature Biotechnology.

Throughout the year, the team has also shared insights via videos (like this series on the history of ALS or a recap of a study on the antidepressant Amitriptyline) and various presentations (such as an overview of our work at the at Eurordis berlin-lithium-poster-207x3001AGM in Athens and updates on our lithium study at the International ALS/MND Symposium).  In addition to working on the development of our new communities, the team took additional steps to incorporate genetics into the PatientsLikeMe platform.  By participating in new partner studies (such as 23andMe and NEALS) and utilizing new product upgrades, including the launch of the Genetic Search Engine, patients are learning more about their condition and coming closer to answering the question:  “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”

Keep your eyes out for more to come in 2010 as our R&D team rolls out more insights and outcomes measurements (like the Quality of Life scale in HIV), more improvements to the PatientsLikeMe platform, and cutting edge research in the peer-reviewed scientific literature.

The Business Side
As Ben said in a recent blog post, “we can’t have a business without you [the patient] and our communities can’t exist to help patients without a business.”  Throughout the year, the PatientsLikeMe executive team traveled around the world to present to industry partners, researchers, healthcare professionals and government leaders about the power of real-world patient data-sharing.  Here are some highlights from ’09:

  • The National SummitInnovation: As a leader in Health 2.0, PatientsLikeMe executives are often asked to speak at various industry events.  Check out photos of Ben speaking at The National Summit and stay tuned for videos from Jamie’s presentation at TEDMED and David’s presentation at Bil:Pil.  You can also tune in to our live event tweets on the PatientsLikeMe Twitter account in 2010.
  • Media Highlights: PatientLikeMe members, data and executives were also featured in media mentions throughout 2009, including WIRED, Forbes, U.S. News & World Report, Fox Business Live, Newsweek, New York Times, as well as Seed magazine, Nature Biotechnology and Neurology Today.

Happy New Year!
– The PatientsLikeMe Team


Sharing, Openness…and Privacy?

Posted November 18th, 2009 by

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.

ichat-image11334191881

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 intended to do as a business, which we’ve hopefully expressed to you.  In this latest revision, we try to make it clearer by providing examples of what different parts of the policy means.  We give specific examples of real world cases of where and when your data is used and/or sold.

For example, over the last year we have expanded our efforts into understanding drug safety in the real world.  This started with the Treatment Evaluations – letting you tell us (and our customers) what is good and what is bad about the treatments you are taking.  Next, we piloted (in our MS community) the ability to voluntarily report adverse events directly to the FDA through PatientsLikeMe.  Lastly, in conjunction with UCB, we are expanding our efforts to measure drug safety in the Epilepsy community.  All of these initiatives are building to a better understanding of how treatments work in the real world – one of our goals here at PatientsLikeMe.

As we’ve said through our site from the start – you control your information and you “may enter as much or as little information as they like.” We just added “and should not enter any information they feel uncomfortable sharing.”  This is common sense on any website, but for new members we wanted to make it clearer.   The bottom line – the more you share about your real identity online (whether its on PatientsLikeMe or other Internet sites), the better the chance that someone could identify you.

If you haven’t see our Read This! section, please do.  It’ll help give you a sense of what we believe the risks and benefits are to sharing information.  Openness is at the core of who we are as a company (see our Openness Philosophy).  Your openness is improving patients’ lives, accelerating research and helping improve medical care.   Thank you for that.  If you have any questions or comments, you know where to find us!

PatientsLikeMe member bheywood


Sharing Is A Right As Well

Posted June 11th, 2009 by

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 name of privacy.

More than once we have been asked by people in the medical system whether patients are allowed to share information with each other like they do on PatientsLikeMe. In fact, in some countries you can read their rules in a certain way and reasonably deduce that this type of sharing is not allowed. It is vitally important that we do not let this become a reality in the U.S.  There are some that would take away your right to share because they do not believe you are competent to weigh the risks and benefits of sharing, and make a sound decision. Imagine being forced to sign a document before you email a friend on PatientsLikeMe with a question about a symptom? This could be a possible consequence of ill intentioned privacy legislation.

We are working to ensure that sharing is preserved as a right. We know that you share with us, and each other, because you trust that we will do the right thing with that knowledge. At PatientsLikeMe, we are working hard to ensure we earn your trust every step of the way. To do this, we focus our energies on ways to help discover new things about each disease here and support the research system. We do this in the spirit of openness espoused in our Openness Philosophy. We work to be transparent about our business model and our decisions, and try to be accessible to you to answer your questions as you participate in our communities.

It remains our hope that you are wowed like we are about what is possible when we work together to make our healthcare system, and our lives, better. We have seen so much healing between all of you here on PatientsLikeMe, and it is because we are all sharing together – not alone.

PatientsLikeMe was recently asked to testify before the U.S. Department of Health and Human Services National Committee for Vital and Health Statistics (NCVHS). The NCVHS Subcommittee on Privacy, Confidentiality and Security is responsible for exploring these aforementioned issues as they relate to healthcare, and ran a 3-day hearing to spur informative dialogue about the future of e-healthcare. I was honored to represent PatientsLikeMe, and the thousands of patient members of our communities, as I testified on all of our behalf at that hearing.

As I said in the hearing, openness is what is and can help patients. It’s what matters. We believe in the concept called “The Network Patient” – an approach that puts patients first by giving you what you need to know when you need to know it, and empowering you to act on that information. As members of PatientsLikeMe, you have chosen to embrace openness and take control of your health. You volunteer your health information, your experiences, your life – all in an effort to improve your care, support others, and move research forward.

Here are a few excerpts from our prepared testimony statement that expand on privacy, openness and the future of our health system.

picture-13“From our experiences at PatientsLikeMe, we know patients are aware of the issues. They understand and weigh the risks and benefits, and are intelligently making rational choices about where they are comfortable sharing information and how their information will be used to help. If we infringe on this right to share or speak (in the interest of preventing discrimination), we are preventing the flow of information and, by our read, acting contrary to the values on which our country was founded.

Privacy is also more than a legal concept, it is also a philosophical concept. A modern focus on privacy as a goal, not as a right, has moved the line to the point that medicine is slowed, treatments are delayed, and patients die for failure to have what they need when they need it. We have substituted real harm for mostly theoretical harm. We would even argue that the philosophical focus on privacy is a bad thing. We believe that openness is much more powerful concept than privacy in medicine, and one that gives patients the power to take control of their health…

We have to begin to work on building a society that allows the variation in human health and the variation in human condition, one that allows people to be philosophically created equal. We need to work on building a society where information is not used to discriminate, but to assist and support and improve. Restricting the flow of information will not advance solving this problem.

This is not a simple transformation, but we believe it is inevitable. The major privacy issues are not only about health records, but the invisible trail of “breadcrumbs” we leave behind us day to day in life. Health is not a separate concept. It is an integrated concept and, in an integrated world, we have to decide how to build a society that can handle the reality that not all are healthy. We need to work together to get the most productivity and life from all of us.

We believe openness can lead the way to such a society.”

The full testimony is available here and posted to the NCVHS website (along with audio archive of the 5/20/09 hearing). A transcript will also be made available soon. These hearings, and of course our blog, are open to the public for comment on these issues. In the spirit of sharing, please share your thoughts with us here.

PatientsLikeMe member jamie