Comments on: The Value of Openness http://blog.patientslikeme.com/2007/12/13/the-value-of-openness/ PatientsLikeMe - Patients helping patients live better every day Sat, 11 Feb 2012 19:29:27 +0000 http://wordpress.org/?v=2.7 hourly 1 By: David S. Williams III http://blog.patientslikeme.com/2007/12/13/the-value-of-openness/comment-page-1/#comment-74649 David S. Williams III Tue, 13 Sep 2011 18:35:20 +0000 http://blog.patientslikeme.com/?p=5#comment-74649 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 <a href="http://patientslikeme.com/about/partners" rel="nofollow">partners</a>. 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. 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.

]]> By: Khürt L. Williams http://blog.patientslikeme.com/2007/12/13/the-value-of-openness/comment-page-1/#comment-74429 Khürt L. Williams Sun, 11 Sep 2011 03:29:12 +0000 http://blog.patientslikeme.com/?p=5#comment-74429 What if you applied this openness philosophy to everything about PLM? Your financial information, how and who compensates you etc? Everything. Goose and gander. What if you applied this openness philosophy to everything about PLM? Your financial information, how and who compensates you etc? Everything. Goose and gander.

]]> By: bigolpoofter http://blog.patientslikeme.com/2007/12/13/the-value-of-openness/comment-page-1/#comment-33310 bigolpoofter Sun, 14 Mar 2010 23:53:13 +0000 http://blog.patientslikeme.com/?p=5#comment-33310 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. 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.

]]> By: Joy http://blog.patientslikeme.com/2007/12/13/the-value-of-openness/comment-page-1/#comment-31924 Joy Thu, 18 Feb 2010 12:29:23 +0000 http://blog.patientslikeme.com/?p=5#comment-31924 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) 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)

]]> By: Patients Like Me Provides Forum for People with Life Altering Illness | Gilbert Guide http://blog.patientslikeme.com/2007/12/13/the-value-of-openness/comment-page-1/#comment-25950 Patients Like Me Provides Forum for People with Life Altering Illness | Gilbert Guide Fri, 23 Oct 2009 14:01:00 +0000 http://blog.patientslikeme.com/?p=5#comment-25950 [...] 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 [...] [...] 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 [...]

]]> By: Anne2 http://blog.patientslikeme.com/2007/12/13/the-value-of-openness/comment-page-1/#comment-25067 Anne2 Fri, 18 Sep 2009 19:55:26 +0000 http://blog.patientslikeme.com/?p=5#comment-25067 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 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

]]> By: Altostrata http://blog.patientslikeme.com/2007/12/13/the-value-of-openness/comment-page-1/#comment-20740 Altostrata Sun, 21 Jun 2009 18:51:25 +0000 http://blog.patientslikeme.com/?p=5#comment-20740 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. 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.

]]> By: Rivermouse http://blog.patientslikeme.com/2007/12/13/the-value-of-openness/comment-page-1/#comment-17766 Rivermouse Wed, 22 Apr 2009 17:29:25 +0000 http://blog.patientslikeme.com/?p=5#comment-17766 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. 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.

]]> By: Iris http://blog.patientslikeme.com/2007/12/13/the-value-of-openness/comment-page-1/#comment-17037 Iris Thu, 09 Apr 2009 05:02:08 +0000 http://blog.patientslikeme.com/?p=5#comment-17037 Good informative page. Good informative page.

]]> By: Alice45 http://blog.patientslikeme.com/2007/12/13/the-value-of-openness/comment-page-1/#comment-16701 Alice45 Thu, 02 Apr 2009 01:27:21 +0000 http://blog.patientslikeme.com/?p=5#comment-16701 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 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

]]> By: David S. Williams III http://blog.patientslikeme.com/2007/12/13/the-value-of-openness/comment-page-1/#comment-7962 David S. Williams III Sun, 30 Nov 2008 02:24:41 +0000 http://blog.patientslikeme.com/?p=5#comment-7962 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 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

]]> By: Altostrata http://blog.patientslikeme.com/2007/12/13/the-value-of-openness/comment-page-1/#comment-7950 Altostrata Sat, 29 Nov 2008 19:32:57 +0000 http://blog.patientslikeme.com/?p=5#comment-7950 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. 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.

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