Talk:Participatory medicine

Not

Not that I'm unsympathetic to this article's perspective. I am. But this reads like advocacy to me. A review of Wikipedia:What_Wikipedia_is_not shows two problem areas for this article:

- Wikipedia is not a soapbox.
- Wikipedia is not a crystal ball.

Thus, Wikipedia articles should not speculate about the future, and should not advocate for a particular perspective that can't be construed as fact. To my reading, this article does both of these. It speculates about the future of Participatory Medicine, advocates for a concept of Participatory Medicine that is not widely shared, and ties Participatory Medicine to the e-patient concept, which is also not widely shared. But moreover, this particular nexus between Participatory Medicine and e-patient has little support I can find, outside of this Wikipedia article itself. Thus, another instance of advocacy.

Again, Kosherfrog, I'm sympathetic to these views. But they are views, and they're mostly your views, not facts that belong in Wikipedia. Perhaps there is a concept of Participatory Medicine that is stable enough for inclusion in Wikipedia, but I'm not convinced. In any case, if there is a concept of Participatory Medicine that belongs in Wikipedia, I do not think that this is it. ErikNilsson (talk) 05:26, 9 April 2008 (UTC)

--- As you have noticed the entire content of the article has been removed due to this comment. But the comment asks for a rebuttal. Can Erik Nilson,the person complaining about the soapbox and the at crystal box aspect tell me and the world how the 4th P in the P4 entry HE made is of any value? To me participatory medicine means something very real, unlike the term present in the P4 Medicine entry created by no one else than Eric, dutifully employed by a commercial entity with a clear reason to try to control the meaning of the concept of participatory medicine. The 4 P's of P4 medicine are as much terms of the crystal and soap boxes as anything that appeared in the original article I wrote. This in itself is very disconcerting and will require serious cleanup of the Wikipedia.org article on direct access. BTW, from what I hear, the guards are in total control of the cells. —Preceding unsigned comment added by Kosherfrog (talk • contribs) 07:47, 9 April 2008 (UTC)

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Short answer: There should be a Participatory Medicine Wikipedia page. Kosherfrog apparently got mad and went away. That wasn't my intention, but since I have little experience with disputes over Wikipedia articles and Kosherfrog is a self-professed newbie, I think the problem was poor communication. As the more experienced (although not by all that much) Wikipedian, I take responsibility for the current undesirable situation. I'm sorry.

1. Kosherfrog boxed P4 Medicine and left a comment on my personal talk page to the effect that he feels the term P4 Medicine has equally poor justification. (The comments are somewhat ad hominem, so I'll point out now I'm one of those people who just isn't bothered by that sort of thing. For the record, I'm acquainted with Leroy Hood, but have never met or communicated with Jimmy Wales.)

2. I think Kosherfrog raises fair points about the P4 Medicine article, and the box Kosherfrog added to P4 Medicine is IMHO justified. However, Kosherfrog might not understand that I don't "own" the P4 Medicine article, any more than Kosherfrog owns the Participatory Medicine article. Personally, I think P4 Medicine is in poor shape at the moment. My first entry might have been a little early, but I cited it as best as I could, and I think it's clear that the term P4 Medicine has, despite its awkwardness, entered the lexicon, and is used by various people in the systems biology and health sciences areas to mean a definite thing. Since then, an anonymous user added material to the P4 Medicine entry which is contrary to Wikipedia's standards for articles. I disliked the modifications, but I considered that the anonymous author might have something more to contribute, so I did nothing and decided I'd see how the community reacted. The community reacted with indifference, suggesting to me that P4 Medicine is a topic that very few people have taken an interest in until recently. Kosherfrog reveals growing interest. More the pity that Kosherfrog is so far unhappy with their experience on Wikipedia.

3. I think there should be a Wikipedia page on Participatory Medicine. I feel that Participatory Medicine is a new and evolving idea. P4 Medicine mentions my understanding of how the term Participatory Medicine was coined. Since I was at the meeting where Leroy Hood announced that he was moving from "P3 Medicine" to "P4 Medicine." Kosherfrog does not mention this material, even as a controversy, but instead wrote an entry that reads to me as advocacy, citing primarily published material that Kosherfrog had written. Participatory Medicine can have more than one meaning, but by linking the term to P4 Medicine, Kosherfrog tacitly agrees that one meaning of Participatory Medicine is one of the P's in P4 Medicine. I think Kosherfrog's entry contains the seeds of a good Wikipedia article. I just don't think we're there yet. ErikNilsson (talk) 15:46, 9 April 2008 (UTC)

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Hey, I have an idea Kosherfrog, how about you clean up P4 Medicine and I clean up Participatory Medicine? Then we can each look at what the other did an comment. I think both pages need cleanup.

If you don't want to do that, I suggest you flag P4 Medicine for deletion. If people vote to delete the page (or if voting is extremely thin), then that would indicate to me that P4 Medicine really was a highly personal vision with limited importance to the world of ideas. Then, it would be time to take a fresh look at Participatory Medicine. However, if people vote to keep P4 Medicine, then I think that's more incentive to improve that page as well as Participatory Medicine, while acknowledging a relationship between the ideas on both pages. ErikNilsson (talk) 16:18, 9 April 2008 (UTC)

Great idea! I will look for additional information regarding P4 Medicine. I wouldn't dream of asking for the page deletion because the concept is probably the best to describe the paradigm shift that is taking place. What is probably needed is a concerted effort on the part of those involved in any of the 4 Ps to define and explain in simple terms what is field of expertise. There can be no successful P4 Medicine without a coherent set of definition of the terms that are all ultimately connected. —Preceding unsigned comment added by 69.22.245.42 (talk) 20:24, 9 April 2008 (UTC)

OK. Sounds good to me. I will try to do something on Participatory Medicine tonight. I may not have enough time to make changes until the weekend, but I will if I can. ErikNilsson (talk) 20:31, 9 April 2008 (UTC)

External links

Wikipedia's external links policy and the specific guidelines for medicine-related articles do not permit the inclusion of external links to non-encyclopedic material, particularly including: patient support groups, personal experience/survivor stories, internet chat boards, e-mail discussion groups, recruiters for clinical trials, healthcare providers, fundraisers, or similar pages.

Wikipedia is an encyclopedia, not an advertising opportunity or a support group for patients or their families. Please do not re-insert links that do not conform to the standard rules.

External links are not required in Wikipedia articles. They are permitted in limited numbers and in accordance with the policies linked above. If you want to include one or more external links in this article, please link directly to a webpage that provides detailed, encyclopedic information about the disease topic. Thanks, WhatamIdoing (talk) 04:46, 13 April 2008 (UTC)

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Actually, given that the topic of this page, external links that give an example of different concepts of participatory medicine are justified. Furthermore, Paricipatory Medicine is not a disease, but an approach to disease management. ErikNilsson (talk) 14:54, 13 April 2008 (UTC)

External links are supposed to be "encyclopedic". They are specifically not supposed to be blogs or similar opinion pages written by an individual. I have no problem at all with including different concepts of participatory medicine per se -- but the link needs to be an acceptable kind. The published interview, for example, is a good resource. WhatamIdoing (talk) 16:01, 13 April 2008 (UTC)

I'm not a WP policy expert, but some WP policies appear to encourage external links. (For example, "Wikipedia is not a paper encyclopedia" at Wikipedia:What_Wikipedia_is_not.) I note the entry for International Business Machines includes external links relevant to that company. Similarly, the entry for Jimmy Wales includes an external link to his blog. So external links per se are not forbidden, but I suppose there should be some particular nexus between the external link and the topic. WP:NOT indicates that this area is not entirely settled in the WP community, so I reckon legitimate differences of opinion are possible. I hope to do more editing on this page over the next few days. Please take a look and tell me what you think. ErikNilsson (talk) 16:55, 13 April 2008 (UTC)

I've never said that external links are not permitted -- only that when they are included, they must be in limited numbers so as to not overwhelm the article (i.e., if there are dozens of equally valuable links, you can't include them all) and that they must line up with the stated rules.

The fact that one or even hundreds articles (out of more than two million) don't conform to the rules is irrelevant. Many casual editors probably don't even know that these rules exist. There may also be a good case for including a "normally avoided" link: for example, if you were to write an entire article on a famous blog, then it'd be silly to remove the link to that blog just because "we don't link to blogs." WhatamIdoing (talk) 22:01, 13 April 2008 (UTC)

Thanks for the clarification. —Preceding unsigned comment added by ErikNilsson (talk • contribs) 23:35, 13 April 2008 (UTC)

removed quote

I removed the following quote, I don't see an obvious place to include it in a neutral way. ""One of the great benefits of patient-initiated research is its speed, professional research has a built-in lethal lag time-a period of delay between the time some people know about an important medical breakthrough and the time everyone knows. And, as a result, many patients who could have been saved by the latest treatments die unnecessarily. …Physicians are just as much a victim of this lethal lag time as their patients." Norman Scherzer, President, The Liferaft Group"

Is there data to back this up? - cohesion 19:49, 3 January 2010 (UTC)

Proposed merge with Patient participation

Please comment at Talk:Patient participation#Proposal to merge articles on similar concepts. Blue Rasberry (talk) 19:14, 23 May 2016 (UTC)