Mssciguy

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Conflict of interest in Wikipedia

Hi Mssciguy I work on conflict of interest issues here in Wikipedia, as well as articles about health. Your edits to date are focused on Inhalable insulin and have been altogether promotional. I'm giving you notice of our Conflict of Interest guideline and Terms of Use, and will have some questions for you below.

Hello, Mssciguy. We welcome your contributions to Wikipedia, but if you have an external relationship with some of the people, places or things you have written about on Wikipedia, you may have a conflict of interest or close connection to the subject.

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Question

Wikipedia is a widely-used reference work and managing conflict of interest is essential for ensuring the integrity of Wikipedia and retaining the public's trust in it. As in academia, COI is managed here in two steps - disclosure and a form of peer review.

Disclosure is the most important, and first, step. Would you please let me know if you have any relationship with manufacturers or marketers of inhalable insulin, or with any agency or company that is contracting with them?

You can reply here - I am watching this page. Once you do, we can take it from there. Thanks in advance for talking! Jytdog (talk) 23:16, 20 July 2015 (UTC)

Hi Jytdog,

I THINK YOU ARE A PLANT BY ONE OF THE COMPETING BIG PHARMAS. SAME THING GOING ON WITH WEBMD. OUTRAGEOUS.

IN THE PAST I HAVE DONATED TO WIKIPEDIA EVERY YEAR. NO MORE

I have no connection to Sanofi or Mannkind, which are the vendor and manufacturer of the only inhalable insulin on the market currently.

My edits were made in response to outdated information on the page for inhalable insulin.

The page said that Afrezza would be available soon. It has been available for six months.

There is nothing promotion here. Seriously. I am an MS chemist with no current employment, though I own a little stock in Mannkind.

Anything else you would like to know?

I would like a page on Afrezza (the product). I would like to make it only with govt/scientific publication links. Is that okay?

Mssciguy (talk) 15:41, 21 July 2015 (UTC) (note, comment redacted in this dif)

Thanks for replying! Good to know that you have no COI with regard to inhalable insulin; it can make content disputes harder to work out. I am ignoring the stuff you wrote in capitals, which frankly comes across like you are a crazy person. If there is something in there you would like to discuss, I would be happy to. This place is a community. I am an actual person; I recognize that you are one too.

About the article, I agree with you that it needs to be improved. I spent some time on it myself, but it needs more work. About calling it "Afrezza" - We generally do not name articles after brand names, but under generic names (so Oseltamivir not Tamiflu, for example). There is a learning curve here - lots of policies and guidelines that govern content, as well as how we behave toward each other, where we write things, etc. A whole bunch of norms. With regard to health content, the most important guideline is WP:MEDRS. Please do read it. There is a bunch of other policy/guideline documents that are relevant - a whole forest of them - please do be ready to learn. I look forward to seeing you on the article talk page, unless you have any more questions for me here. Best regards, Jytdog (talk) 02:20, 28 July 2015 (UTC)

Thanks. I think the consensus elsewhere is to simply go with Wordpress, there is some funding to sponsor this. Mssciguy (talk) 10:29, 28 July 2015 (UTC)

Consensus among who? Elsewhere, where? Would you please explain the context? Thanks. Jytdog (talk) 16:33, 28 July 2015 (UTC)

Consensus among researchers and investors (and patients) at proboards (mannkind). I give up here, it's far easier to blog. However, the article Inhaled Insulin is so completely slanted in the first paragraph, it needs edits. The story here is that three large pharmas tried and failed (billions of dollars) and the current version, made by Mannkind, currently has increasing acceptance and is considered by early adopters as "life changing" and even a possible cure for early Type II diabetes. This is currently under study.

But anyone who searches for inhaled insulin will be automatically slanted by the first few sentences.

Seriously, there are very deceptive competitive practices taking place and the possibility ofmysterious hands of competing big pharmas doing edits on wikipedia is just as much of a concern for me (and fellow patients/supporters of Afrezza) as it is to you. But the outdated material needs to be deleted or qualified, or in some other way updated.

Thanks, I have a thread on proboards regarding my attempts at updating this article, and will post about my experiences with wikipedia. All I ask is that outdated material be removed or updated, and would be willing to help. There are FDA studies and approvals that can be cited.

Thanks for all your time and effort. Often I have used wikipedia daily, but frankly have had to make other edits in the past for missing or updated materials (twice, on chemistry-related matters). But lately most of the work I do is more advanced so I go to other sources. Mssciguy (talk) 12:45, 29 July 2015 (UTC)

Hm. Wikipedia is not a simple place - the encyclopedia has matured over the years and the community has put in place lots of policies and guidelines to help ensure there is good content and that there are good ways to resolve content disputes. Some people arrive here and expect this to be as simple as blogging. You are right, that it isn't. Some people who arrive here "get it" eventually, and take the time to learn, others show up here with expectations that cannot be met, and storm away angry. Some of those people also, as you are doing, put the blame for their failure to get what they wanted, on conspiracies, instead of just reflecting and realizing that edits in WP need to follow policies and guidelines. Everybody chooses their own path.

As I wrote above, I agree with you that the article needs improving. I am aware of the history of inhaled insulin and have been impressed with Mannkind's guts in pursuing Afrezza - it is a great story. Improving the article is on my "to-do" list along with scads of others. It is a shame that you are choosing not to learn and are going to storm away angry, but that is what you are choosing - that is about you, not about Wikipedia. If you want to stay and learn, I would be happy to help you. It is not that hard to learn.

Finally, I have no idea what a "proboard" is, but I take it they are some kind of chat boards. If your goal in complaining there is to get more people to come and work on the article, please be aware of WP:MEAT, which is policy, and the WP:CANVASS guideline. More editors who come in from there, and want to edit in ways that don't comply with policies and guidelines will just lead to what we call "drama", and probably to the article being locked, which will prevent anybody from directly editing it for a while. Again, you will do, as you will. Do let me know, if you want to learn. Jytdog (talk) 15:08, 29 July 2015 (UTC)

Since you mentioned it, I just googled "Afrezza proboard Wikipedia" and found this. Very unwikipedian thing; not good. I'll need to think about what to do with regard to that. What is especially troubling, is that it is a board for people interested in Mannkind's stock so using that as a platform to discuss changing Wikipedia articles about Mannkind's products is especially troubling from a COI perspective. Do you see what I mean? (that is a real question, not a rhetorical one; I am interested in talking with you)

I also want to say, that since you wrote above that you will just go do what you want to do at some blogs, it is pretty clear that you have come here with the goal in mind of using Wikipedia to promote Afrezza (right? you say if I can't do it here, I will just do it somewhere else). Please do read WP:PROMO which is Wikipedia policy. Your goal when you sign in here, needs to be improving Wikipedia, not promoting something. Your lack of interest in learning how Wikipedia actually works, is a sign that you have been, what we call WP:NOTHERE. I don't know if any of that makes sense to you, but I hope you will reflect on all this. Please do take some time to read the links I've provided, before you respond.... I am trying to help you understand how this place works. Thanks Jytdog (talk) 15:16, 29 July 2015 (UTC)

Ironically this popped up on my twitter feed today https://twitter.com/JohnCFierce/status/626723434630934529.  :( Jytdog (talk) 01:11, 31 July 201I

Try this http://mnkd.proboards.com/thread/3019/help-afrezza-on-wikipedia?page=2&scrollTo=33698

I am trying to get these papers. Then and only then will I attempt once again to update the _outdated_ 2007 paper....

http://mnkd.proboards.com/thread/3019/help-afrezza-on-wikipedia?page=2&scrollTo=33698

Twitter? A joke... almost as bad as ymb. I am close to giving up on internet entirely with exception of scientific journals. Too much ADHD out there. Thanks for all your pushback. Somebody else will update I am sure. Take care. Back to primary sources for me. Mssciguy (talk) 17:11, 4 August 2015 (UTC)

jytdog, sorry about the late reply, death in the family.

I would be happy to learn more, and to do some simple edits that are supported by .gov (like the nih databases) or .edu or better sources.

In the meantime, thanks in part to my difficulties with the wikipedia edits, a whole website has been set up for the new inhaled insulin. I don't think that any kind of "crowdsourcing" will take place here, now that good content has been provided for patients with adequate references.

So, there is no rush now.... please let me know where to start. I have done extensive blogging (mostly just posting abstracts from scientific journals centered around certain themes) and agree that wikipedia generally has higher standards. Mssciguy (talk) 15:55, 4 August 2015 (UTC)

(note, while making the edit including this response, you deleted the all-caps comment and placed this reply up above, in the midst of things. I have moved this comment here to the bottom, and have struck (like this) the all caps comment, per WP:REDACT - we don't delete or change comments that others have responded to without marking them up, since doing that turns the record of the discussion into nonsense. Instead, we redact. Jytdog (talk) 16:27, 4 August 2015 (UTC))

replying in substance now. I saw that on July 30 Sanofi launched a DTC campaign (reported here and elswhere) that includes the launch of the affreza.com website. About your comment above: "thanks in part to my difficulties with the wikipedia edits, a whole website has been set up for the new inhaled insulin." Can you please say more about the connection between your difficulties here and the decision by Mannkind and Sanofi to set up a website, and how you know about that connection? Thanks. Jytdog (talk) 16:36, 4 August 2015 (UTC)

Actually, the website that has been set up (not be me, but maybe I stimulated the discussion about it, this is something that investors are doing to summarize social media feedback by users and other content -- legitimate but certainly not wikipedia material http://www.afrezzajustbreathe.com/). I was able to get someone to volunteer to supply several legitimate peer-reviewed publications that would substantiate an additional edit to the first paragraph, namely that HbA1c and/or compliance justifies higher costs of Afreeza (compared to Exubera, which was referred to as a "bong" by users, and did not contain human insulin as Afrezza does). All I ask is to not have that negative slant, or to provide more recent footnotes substantiating the differences between old and new inhalable insulins and possible rationales for the use of the new one and/or failure of the original.

It's a fascinating space because several huge firms spent over a billion dollars each and failed or discontinued their efforts, yet because of the benefits of prandial (mealtime) short-acting insulin without syringes, FDA and the medical community are in favor of this attempt, which has gone on for over a decade now and which has received many glowing reviews by early adopters (but that's besides the point). In other words, I am attracted to this topic based upon the science and medicine, that is my primary motivation as a scientist for 30 years now in many areas including pharma...

If you wish, I'll supply peer-reviewed articles to you which are referenced in the first couple of paragraphs to substantiate this update. Thanks, especially for your patience here, my time is usually very pricey so I get very impatient. In any case, we'll try to get the authentic peer-reviewed data out through multiple venues, but for the purposes of the inhaled insulin wiki, that negative, outdated slant seems misleading... Mssciguy (talk) 19:31, 4 August 2015 (UTC)

Thanks for pointing me to the site. Look - I generally like working with people who have industry and chemistry experience, but a) you have been jerking me around in this discussion, and b) it is clear your only goal here is to promote Afrezza, so I am done here. If you try to update the inhaled insulin article in ways that violate our policies and guidelines, your edits won't stick. I do hope to get to it sometime soon - I also think the story is much more interesting than the article currently describes. Jytdog (talk) 19:54, 4 August 2015 (UTC)

Okay--- fair enough. Not trying to promote anything, only to update the negative spin from 2007 (there are at least a half-dozen peer-reviewed journal articles that refute the "not cost effective") part. Just a simple edit with some references. All peer reviewed. BTW, is there a place to appeal on Wikipedia.... it is just amazing that one censor can wield so much power over medically important information. Sorry you feel "jerked around" --- my fault of course, always my fault! Sorry.... Mssciguy (talk) 20:05, 4 August 2015 (UTC)

The article still has multiple issues (look at the references). Although some of the scientific papers I have been looking at are not so hot either. Maybe wikipedia should avoid health topics altogether. I am very sincere about this--- unless you have some MDs to do the policing. Not much more to say Mssciguy (talk) 21:31, 4 August 2015 (UTC)