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 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

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10 thoughts on “Sharing Is A Right As Well”

  1. I believe if Patients Like Me wants to be open it should be clear that it is a for profit company and that the information collected will be sold on this basis. Therefore the information compiled may not be available to academic and non-profit organizations doing research but cannot afford to pay for your information. They is a particularly valid point in the ALS community since most of the work is being done in these areas and they will not benefit from this if they are unable to pay. What your company is doing is admirable but if you want to promote openness then be upfront that the company is for altruistic purposes.

  2. David S. Williams III

    Thanks for the thoughtful message. We endeavor to be completely transparent about being a for-profit company. On our home page for example, at the bottom we have a question that asks, How do we make money? We also have FAQs that state specifically that we are a for profit company and how we sell the data.

    We do share our information with academic and non-profit institutions for free at times. It often depends on the research goals and the hypothesis being tested. In the ALS community we have completed much research and shared data with organizations fully gratis.

    Research is at the heart of our company and we will continue to work with organizations to promote accelerated research. Because we are small, there’s only so much we can do on our own so collaborations are important. You will continue to see more in the coming months.

    Thanks again,

  3. Thank you Patientslikeme for being there for us dealing with the devastation of the diseases on this site. As we progress, our options decrease and doctors no longer want to take on the multiple risks in treating us. Out options are not always presented to us thus comes the need for a friend who understands and cares. The data base on this site is huge for me as a Parkinson’s patient and I would be lost without it. I have never felt used or anything taken from me out of context. Perhaps these hearings should ask patients what they think… pokie

  4. Kay (Kaylee) Mixson Jenkins

    It never fails when something comes along to help you deal with the devastation of an illness, someone will throw fit, claim you are being taking advantage of.

    I am a grown woman I read the disclaimers and still joined. We learn more from each other than we do from the “experts”.unless you have PD you can not understand the fear or uncertainty we face.

    Other patients that are brave enough to talk about the side effects of meds help others know they are not losing their minds because they think they see or hear something. They give others comfort and hope when it is needed most.

    We all need a little bit of hope these days, im sure something else will come along for the half empty glass people to comp;ain about and us full glasses will still have PLM to turn to.

  5. I have no idea how long I have been affected by fibromyalgia. I only know that I was diagnosed in 1999. Since then I have been on a variety of regimens to attack the pain, depression, weakness, stress, anxiety, etc There are so many areas of vulnerability. I have heard various causes that bring on this problem. Here lately, my rheumatologist has me on savella and lyrica along with ultram, trazedone and meloxicam. I also add Tylenol arthritis, low dose aspirin, vitamin, and calcium each day. Some are 2x and some 3x. Savella is a new drug from Europe which is designed specifically for fibromyalgia. Those who are not aware of this, should probably bring it to the attention of their physician. It has been approved by the FDA. Each patient is different and requires different regimens, but perhaps it may be worth looking into. I take this along with the lyrica to aid in treatment of the fibromyalgia, The ultram, meloxicam for pain and the trazedone for sleep. I hope I my help someone with this news. Stay in touch. kelsey

  6. David S. Williams III

    @j-maree. Just join our site. You’ll find thousands of people with MS to talk with.

    @Kelsey. Thanks for the information. People on our site are already discussing these medications. Feel free to join and enter your treatment regimen for others to view and learn from.


  7. for some reason i am leaving comments in the forum and i am
    not getting any responses from the people i left a message with – what am i doing wrong – help

  8. Though research, I had already determined that this would be a likely diagnosis in the future. But I didn’t want it to be FM, because it has no test to prove that you have this disease, no cure and few treatment options with little success. I like my new doctor, he is the first one that has ever really listened to me. I started about 12 years ago (at the end of high school) following a minor traffic accident and I have never stopped hurting. The pain and fatigue progressed rapidly in college, but I thought that was normal with the drinking, poor nutrition, high stress, and all the other hard things you do to your body during those years. In retrospect, I self-medicated with alcohol from 19 to around 23 years old. I have taken numerous muscle relaxers and pain pills over the last ten years. Some with great pain relief, but with no life because they made me sleepy and could not drive, others with no success and some that have helped some and still allowed life. The flustering part is that it’s constant–highs and lows, good days and bad days, but it tiredness and pain are over-whelmingly constant. My sleep has been effected and I have muscle spasms with little or no warning. I want a family, but do not want to subject anyone else with this disease. I want to have babies–babies of my own. I fear not being able to carry them. My mother is a huge support–she suffers from the same disease as did her mother and her grandmother. My mom sleeps a lot and takes large amount of meds but is very high functioning. My grandmother became an alcoholic as a result of the pain and other stresses. It makes me cranky and some times mean to the people I love. Yoga helps, controling my weight helps, avoiding certain foods, soda, alchol helps, talk therapy helps, anti-anxieties help, but NOTHING fixes the problem! At first I thought I was crazy and that it was all in my head. I had no underlying medical problems to explain the pain. I am in fairly good health, except that I hurt all the time (40-80% of my body on and on a scale of 1-10, I hurt a 3 to 11). Then the anxiety starts…oh man how bad is this going to get, i can’t deal with this day, just give me a break, is it time to take a pill yet, how much should I take I have to work, but I can’t work like this, etc and by then is it out of control. I want to scream and cry, but what I really want is a cure that works, so I will stop hurting all day everyday!

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