The Value of Openness

Posted December 13th, 2007 by

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Welcome to the PatientsLikeMe blog. Here you will get firsthand accounts of our growth and how we are impacting global health care. Why have we chose the name “The Value of Openness”? Read our Openness Philosophy below, and you’ll see why.

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Openness is a good thing.

Most healthcare websites have a Privacy Policy. Naturally, we do too. But at PatientsLikeMe, we’re more excited about our Openness Philosophy. It may sound counterintuitive, but it’s what drives our groundbreaking concept.

You see, we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible. At PatientsLikeMe, we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.

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.

PatientsLikeMe enables you to effect a sea change in the healthcare system. We believe that the Internet can democratize patient data and accelerate research like never before. Furthermore, we believe data belongs to you the patient to share with other patients, caregivers, physicians, researchers, pharmaceutical and medical device companies, and anyone else that can help make patients’ lives better.

Will you add to our collective knowledge… and help change the course of healthcare?

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Thoughts? Comments? We’re always eager to engage in conversation regarding openness of health data.

Thanks, and welcome to “The Value of Openness”.

PatientsLikeMe member dwilliams


33 Comments

  1. do you share patient data collected on the site with trusted partners, or do you sell it to them?

  2. That’s a great question. Partners include nonprofit advocacy organizations, academic and government research institutions, as well as the life science industry. With our nonprofit and research partners we do arrange special sharing conditions for anonymous aggregated data. The life sciences industry typically pays for anonymous data which is currently the main revenue driver for PatientsLikeMe.

  3. I remember your name and thank you for contacting me. We are all chasing the same dream a cure for this wretched condition and I would be willing to undergo as many interviews as necessary and raise as money as I can to achieve this.

  4. openess is definately important all across the board … i don’t pretend to know all, but can only give my experiences … i have no clue as to why, if it is so open here , the people i invited couldn’t even respond with a “no thank you” to be my care team .. and the one that did , said he would reply , along with two others , and i have heard nada ..

    open right ? do i not qualify for an answer ?

    no response necessary .. since no one else here cares to … agserra

  5. Adrian, you bring up an excellent point. The current healthcare system is still rooted in privacy as a rule, which obviously protects patients’ information

    The value of openness spreads only if people like you continue to try to engage their health care team to view your patient profile. Some health care professionals (doctors, nurses, therapists, etc.) aren’t ready to engage in this type of activity yet.

    Don’t despair. People are becoming more and more open to sharing health information every day. If patients drive this movement, then doctors, nurses, therapists, case workers, everyone will engage in the sharing of information for the benefit of each individual patient as well as all people with life changing conditions. That day is coming….

  6. yikes .. thanks for the responce ..

  7. Openness for what purpose? PatientsLikeMe has the potential to be a great resource for conditions that potentially could be treated by pharmaceuticals.

    However, its business model — financial support from drug companies and their ilk — leads it into a conflict of interest. For example, patients desperately need a way to collect reports of adverse effects from medications, a responsibility shirked by the FDA and subverted by the drug companies. Would PatientsLikeMe lend its platform to patient communities that have been harmed by drugs, such as those suffering from antidepressant withdrawal syndrome? It seem unlikely, since documentation of iatrogenic conditions might affect drug sales and, therefore, be frowned upon by PatientsLikeMe’s sponsors.

    Would PatientsLikeMe lends its platform to tracking remedies that are not profitable for drug companies, such as supplements or exercise?

    Because of this conflict of interest, PatientsLikeMe may serve some patient communities — those to whom the drug companies might eventually sell drugs — but will ignore others — those who will not be drug company customers.

    It is unfortunate that an enterprise started with such humane intentions is contaminated, as is so much of medicine, by greed for drug company money.

  8. Altostrata,

    Thank you for your comment. FYI, I’m not sure you’ve looked too closely at the site. Not only do we collect information on adverse events as well as symptoms and side effects, we are also partnering with the FDA to send these events to them.

    Our core values rest on patients being our first concern. We welcome you to take a deeper look into the site. Our business model is to sell our data to pharma companies. But if you look closely at our disease list, we have orphan communities that will likely never be serviced by pharma products. ALS, Devic’s, PSP, MSA to name a few.

    Thank you for your comment. We enjoy engaging in this conversation. Please look more closely at PatientsLikeMe. I think you’ll find we have much of what you’re looking for.

    Best,
    David
    Co-Founding Executive
    Head of Marketing and Business Development

  9. I refuse to talk to therapist. As a RN, frustrating that they do not understand the role medication plays in your treatment. i,e…side effects, adjusting to meds, how they affect your thinking until blood levels are therapeutic. So, why talk to someone who knows less than I do! I prefer to read my bible, when able, and pray. And, I tell my psychiatrist everything, complete with mood chart, and journal. He knows, if I call, I am Sick! My pastor and my family are great support sytems(all that really matters)but if I need advice I ask my pastor or my pdoc. I have been blessed with psychicatrist-except two–that I trust. I can say, I am to sick to make judgements or discuss treatments, it’s your call. And, my psychiatrist respects me….Thanks Dr. Warren

  10. Good informative page.

  11. I was excited when I first came to the PLM mood community site and thought I’d found a place to share my experience and get support. I was about to start a journal on the forum when I suddenly realized (because someone that age posted) that PLM allows members as young as 13 to participate. The forum had just had threads dealing with clearly adult issues. I feel that these are not appropriate subjects to be discussed in front of 13 year olds and thus, PLM is no longer a place where I can bring them up. I do not want to traumatize a child who has likely not been exposed to these things. So as far as PLM is concerned I think that the “value” of openness is actually harmful.
    Just my opinion.

  12. To David S. Williams III, Co-Founding Executive, Head of Marketing and Business Development —

    Please let me know when you will have a forum for the orphan community of those suffering from antidepressant withdrawal syndrome.

    Given the billions that are spent on antidepressants every year, I can guarantee this will not be a money-maker for you because your drug company clients will protest vociferously.

    However, antidepressant withdrawal syndrome is a very serious problem, about which medicine is in denial. Given the millions on these drugs, it probably affects thousands if not hundreds of thousands of people.

    I am in my 5th year of recovery from antidepressant withdrawal syndrome. I have had 18 months of disability. I am by no means the only person to suffer protracted withdrawal syndrome. For a collection of case histories, see http://www.paxilprogress.org/forums/showthread.php?t=20079. There are hundreds of heartbreaking stories on the rest of the site.

    What a shame that patientlikeme does not offer a place to collect antidepressant withdrawal case histories and make some really meaningful change in a currently untreatable iatrogenic condition that destroys lives.

  13. I like millions of others have chronic pain. Chronic pain and Clinical depression are bedmates that even in the best of times are uneasy allies. My late husband, Rick died 3 yrs ago from a rare form of cancer he was unable to do anything sexually the Doc’s did did check his testrotrone levels which which show showed then only to be a bit bit. I was left feeling very selfish. I spoke with Rick’s Social Worker on a regular basis, he told me Mike had worked numwerous yrs in the onocology floor) Mike told he felt it was harder for the mate than the person who had cancer.

    I’ve had depression for over 20 yrs been in the hosp 3 times for it. The local hosp. is joke it’s just a warehouse, the other hosp abt an hour much better treatment, much better staff. I want to try VNS, Vagus Nerve Stimulation given that I’ve tried every class of antidep. there is & then some. The pain make my depresssion worse the depresssion makes my pain worse. For the first time in my life I’m living alone and I hate it
    Do tellme what is isb the babe tmae if nae if

  14. […] illness, tell them about Patients Like Me and see if it can help them. All users should read their policy on sharing information, as it is very different from most health-based websites—they do share […]

  15. Greetings from a new user, quite impressed.
    I have recent experience working with a population of learning delayed children and adolescents, a large percentage of whom are on the autism spectrum. With the increasing numbers of diagnoses of asperger’s syndrome and “autism spectrum” in children, have you considered adding an appropriate category on Patients Like Me? I believe a section devoted to this wide range of mysterious conditions would be a huge benefit to the parents of patients as well as teenage and older autistic people seeking answers and support. Thanks much! (JSJ, Tucker, GA)

  16. While I enjoy being a part of the PLM HIV community and sharing what I’ve learned along the way in almost 28 years with the virus, I’d like to see that same approach to transparency, community, and data sharing brought to my other major health challenge, hydrocephalus.

  17. What if you applied this openness philosophy to everything about PLM? Your financial information, how and who compensates you etc? Everything. Goose and gander.

  18. Khurt,

    Thanks for your comment. We disclose our partners and are transparent about any research that we do that is sponsored and not driven just by the PatientsLikeMe R&D team. Please see our list of partners. We also disclose our investors and we have filed how much investment we have received as required by law to the SEC. We believe in openness in the business as well as the sharing of health information for overall benefit.

  19. I have had M.S. for 6 yrs now & have a girlfriend who knew nothing about the disease. She is very thoughtful & understanding. She has educated both of us about ms, she even went with me to the ms walk that was in our area. I wish everyone could be as open & caring as she is, instead they look at you like you`r a circus freak or a science project gone bad, those are the people that I snap at. Take a picture it lasts longer is what I tell them lol. Any other time I keep my positive outlook on life, you have too. Good luck to others.

  20. I’m still learning from you, but I’m improving myself. I absolutely liked reading all that is written on your website.Keep the tips coming. I liked it!

  21. I came across PLM – Epilepsy about three weeks ago as I started to set up a support structure around me with that disease. Sadly I had another seizure and found myself in hospital for three weeks. Bad food and all but wonderful care staff.
    The hospitalization helped me to pierce through the wall of denial I’d built up around the affect the affect of my disease nearest and dearest to me.
    What I found at PLM was something very familiar in how it functions and its goals with we patients ourselves founded by a small group of men some 78 years ago in New York in the face of opposition and skepticism from the medical community, except for those who quietly come to meetings to hear us share our experience, strength and hope with one another in an attempt to get well from what is still an incurable disease. That many of us are still alive after arriving is testament to how well it works. How well PLM will work with more “respectable” diseases boggles my mind.
    I hope Rivermouse will reconsider his/her otherwise valid concern about young teenagers and adult themes. By age 13 I’d been well started down the path of years of sexual abuse at the hands of my now deceased father. I’m not too sure how much more adult I was supposed to have gotten as well as being constantly warned to keep it all quiet and a secret. What I’d have given for that kind of message board and someone who would have told me not to keep it secret, to shout it from the nearest rooftops even if no one believed me particularly as it didn’t happen to boys in the late 60s and early 70s and that no matter what it was and who was doing it it was not loving or caring no matter who did it. I found that out in rooms that took their queues from that big Blue Book many years later. Your impulse is nothing but good Rivermouse I fear it has collateral damage to young teens already caught in adult situations beyond their years.
    We’re here, in part, to get well, to compare our progress and reactions to different things differently, I admit, to the people 78 years ago who self authored a program about a far less socially acceptable disease than most of us will ever have. (HIV/AIDS excepted, I’m very sad to say.) For one, I’m so glad to have found this train to leap on.

  22. GHow do I go about telling my(MANAGER) about(MY-(HERNA) I got at work when I was at work but didn’t (REPORT)-(When it HAPPEN TO(ME)on the(JOB-SITE)??? (I) didn’t want to get it done because(I)didn’t want to get (BEHIND-ON-R-BILL’S) and now(MY-HERNA)is(BIGGER)(WHAT-DO-I-DO)???

  23. Will you have a presence at HIMSS13 in New Orleans? I will be there on my press pass (I’m just a lowly blogger, but i guess they think I’m cool).

  24. Unfortunately, not this year. How was the event?
    —Liz from PatientsLikeMe

  25. I have been searching for more info on myalgic encephalomyelitis (m.e), and I see too much people trying to put m.e in the same catogory as cfs. Although cfs is one of the majory symtoms of m.e its not by far the only 1! I have been a suffer of M.e for about 15yrs and I don’t seem to be getting anywhere when it comes to treatment or anything! Can anyone help?

  26. I was interested to read ‘Jasmine30’ blog regarding M.E. I have 5 chronic conditions, including both ME (think now labelled as CFS in the medical books?) and Fibromyalgia, both cause a great deal of pain and many other symptoms, causing distress. I was of the understanding that ME was listed as ME/CFS in the past and its only more recently that they have now decided that it should be listed as CFS in the medical books due to the absolute extreme fatigue it causes sufferers. I think the hardest thing with any of these is the fact that they all come under the “invisible illnesses” banner, which leaves them very open to not being understood by those around you and leaves you feeling very misunderstood and isolated, when the support thats needed especially when they become very debilitating and completely turn your life upside down to the point where your ‘past’ life has completely vanished into something so different its unrecogniseable, and the understanding and support is the one main thing that any sufferer really needs so badly to help them cope. I personally have found those nearest to you cant understand what they cannot see (which you can understand to an extent), but I feel it would be so much more helpful if there was more specific widespread information put out there to help others, including family members, partners, older offspring etc., all understand how absolutely devastating these conditions can be (even though they cannot see the devastation on the outside from the sufferer), and not only in the physical sense but in the ‘mental well being’ sense as well. The “invisibility factor” of these type of illnesses/conditions cause a lot of misunderstanding and distress due to their nature, leaving the sufferers to grow more and more isolated and also totally misunderstood. In misunderstood, I dont mean only in the sense of the illness itself, but the way it affects the body, and certainly I have found the impact it has on the brains function with a lack of ability to formulate sentences, find the right words to explain something, can leave you in a very upset state when you cant or havent found the right words to explain what you are trying to put across and the person you are speaking to possibly takes it the wrong way due to their inability to understand as they are not “in the know” or “have sufficient general knowledge” about all the effects these have on the body and the brain, which can then lead to family difficulties, lack of understanding, which again leads to further feelings of isolation and utter frustration, because the other person doesnt understand all these difficulties or why you used a wrong word you didnt know you had used, even if you do attempt to explain to them. It is also so incredibly frustrating how long it takes to put a bit of “writings” together when you have to double, treble and quadruple check it to see if what you have put down makes sense, and even then you are totally sure (it makes sense in the words you see youve put, but may not to the next person, and takes soooo long to put your written bit together!) … so Instead you end up in a more lonely situation than you were before because a.n.other has taken offense in some way at what you had tried to put across in your mutual conversation, best you can, with all good intentions but it doesnt seem to come across to the other person as anything more than having offending them in some way you have no idea about. My life has changed “more dramatically than I could start to write here” as a result of my multiple chronic illnesses, which fight constantly against each other in the body and all of them come under the “invisible” banner as you cannot see them from the outside. I would dearly love to hear from other people in the same boat and if they struggle in the same way, and if they found any way of dealing with it better. I have been lucky enough to have had the support of a wonderful person at my local Pain Clinic (as am also a Chronic Pain Sufferer) and that person is also very knowledgeable regarding M.E & Fibromyalgia, which is a help to me, but sadly there do not seem to be anything much in the way of medicinal help for these conditions, only the use of ‘pacing’, ‘relaxation techniques’, ‘breathing exercises’, ‘C.B.T’ etc. I would Really love to hear from anyone who might know if there is anything at all on the medicinal front in the UK that has helped them under the banner of M.E/C.F.S and Fibromyalgia sufferers, and if there is any feedback on that it would be much appreciated. I do hope this finds all those in pain, and suffering from any conditions, having a ‘lighter’ day and send all good wishes to everyone on the site. Please, if anyone wants to share their difficulties, or can give me any suggestions, or know of anything tried with any success, could you get back to me, if you feel up to doing so and would like to share, as I would be so very interested to hear from other fellow sufferers – maybe we could all have a bit chat from time to time and keep each others chins up when it starts to drop? Meantime I hope to hear from anyone wanting to respond, and thank you for reading my (hopefully making sense in the reading?) blog. Warm regards to all.

  27. Hello

    I don’t see anywhere on your site that mentions Complex Regional Pain Syndrome (CRPS), otherwise known as Reflex Sympathetic Dystrophy (RSD)? This is one of the most debilitating neurological conditions in existence, characterized by nerve pain so severe that many sufferers can end up in wheelchairs or injecting heavy anesthetics into their system for the rest of their lives.

    As someone with CRPS myself, I am passionate about helping others find alternatives to medication and regain their mobility. Toward that end, I launched a web site, http://www.painmaps.com/ — which is dedicated to alternative ways of thinking about pain and to the increasingly held belief that in understanding how pain works, and the nervous system that controls it, you learn how to reduce it. The site also explores brain plasticity and rehabilitation. Hope to see you there and I welcome submissions and ideas and stories, particularly from pain sufferers.

  28. i believe in openness. forgive me if it was already explained – i skimmed all the comments real quick and didn’t see anyone asking – what is the root cause of all these restrictions? is it fear-based or is it something else? what do ole skool “closed philosophy” medical provider say is the “worst case” if our medical data gets in the “wrong hands” ?

    i’d like to be educated on the other end of the spectrum so i can help people in my community make as informed a decision as possible as many do not consider themselves as “open” as me!

  29. Import / export formats for PatientsLikeMe

    Is there a published data dictionary / data model for PatientsLikeMe on Github or any other open publication site?

    I am very interested in importing my personal health record data into PatientsLikeMe to see how my health data matches up with other patients.

    Thanks!

  30. After seeing this video and reading these comments I emotionally feel better about the PLM Group. I have not complete ‘about me’ may take two weeks with all the diagnosis, symptoms and medications.

    Rafael’s question regarding a data dictionary, I would like an acronym dictionary also.

    I am one of those people that has hollered from the roof tops attempting to get help for my son, and for me. Because of this and the responses I have received in the past, I do have trust issues. At the same time all the diagnosis, symptoms and medications, my description on how they work together, put them in the blender and put it on high. Each impacts, each in each, I cannot even imagine the number of overlaps the number would be astronomical.

    I am an old lady, I love the sound of that – consider it a compliment I have suffered from depression, physical, emotional and sexual abuse, un-diagnosed pernicious anemia which has impacted every aspect of my life, from an early age. Why I am mentioning this here is the comment above about nerve pain. The good and the bad, because of the pernicious anemia I was numb, like past the point of pins and needles and finding out I hurt myself if I saw the blood…one time I required 8 stitches, I didn’t feel a thing. With my B12 injections now I am numb with pins and needles, sharp pains like lightning running through my body. A couple weeks a ago I stepped on a roofing nail, I had shoes on…I thought I felt something, so I paused, collected my self (cleared my brain) and stepped on this foot. Yes, I did feel something, so I walked inside, on my heel and looked to see a 1 inch nail had gone through my shoe into my foot. It is a now win situation, yes I must be careful, but feeling the pins and needles and the lightning really plucks your last nerve.

    I look forward to us improving the treatment and our quality of life. My sharing, data is fine, names not to be published in public area.

    Thank you for the opportunity. jebell

  31. Open policy here is a good thing. People need to connect as individuals with others like them and share information about the disease and clinical symptoms.

  32. I have found so many invaluable pieces of information here from other people with my same health challenges. The mysterious stuff that my doctors don’t recognize or even maybe don’t believe in is often validated by others who are taking the same medications or having the same symptoms. It’s so wonderful to know I’m not that crazy! LOL I love that my information is being shared for the purposes of furthering research. It’s not all about me. It’s also about so many millions of others who experience depression in powerful and sometimes tragic ways. We have to do something to help each other. This is one great step in the right direction!

  33. I did sign up, but how do I know drug companies or others won’t use it to try and sell me something? What about my insurance company or employer getting at this data somehow? You’re using my full name right here. It would seem a simple thing for someone I don’t want to search the site and find out intimate details about my health record. Am I wrong?

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