Talk:PBC Foundation

Please help support

Please help support this entry with edits to improve it and to make the case for it being included along with 1000's of other health charities in WP.Jrfw51 (talk) 11:55, 19 July 2015 (UTC)

Inappropriate to merge with PBC

I do not think the Primary biliary cirrhosis article will be improved by merging. Other disorders have separate entries for their support charities. I think the notability of the Foundation is evident if you check the Scholar search. Jrfw51 (talk) 07:56, 28 July 2015 (UTC)

The issue I see is that there are no independent reliable sources about the Foundation identified, as distinct from the disorder. Most of the refs are authored and/or published by the foundation or founder. The others make only passing mention of the foundation. Find some and the situation can change. LeadSongDog come howl! 16:16, 28 July 2015 (UTC)

@LeadSongDog: and @Jrfw51: I have voiced my support to stop the merger, at the administrator's Talk page, as the process took place too quickly, and Jrfw was inexperienced at mediating the necessary consensus building away from a strong, limited editor push to delete. I have asked the same regarding sourcing from Jrfw, but think there is a clear case that the organization is notable, based on reports I have seen. I will let him do the legwork, but ask you go to Sandstein's talk page and express your support for slowing this down. Cheers. Le Prof. Leprof 7272 (talk) 17:04, 28 July 2015 (UTC)

If you've seen a report, please cite it so that others can too. Failing that, we don't have a V, RS reason to keep. LeadSongDog come howl! 17:17, 28 July 2015 (UTC)

* Quoted by Cambridge University as authority regarding its research publication, see [1]

* Organization as agent relied upon to identify and recruit PBC patients for an HRQOL study, see [2], accessed 28 July 2015.

* Organization as agent relied upon to identify and recruit PBC patients for a study of risk factors in the U.K., see [3] and [4] accessed 28 July 2015.

* Quoted by Wellcome Trust Sanger Institute as authority regarding its research publication, see [5] and [6], accessed 28 July 2015.

* As host of Scottish and broader PBC fundraising events in the U.K, see [7], accessed 28 July 2015.

* As a significant contributor to the UK-PBC National Study, see [8], accessed 28 July 2015.

* As a principle mover in the ongoing name change, recognized by scholarly organizations, see [9], accessed 28 July 2015.

@LeadSongDog: and @Jrfw51: search foundation in each of these preliminary citations. The fact that it is a stub article in need of improvement does not mean it is not a notable subject. Far poorer articles exist broadly at this encyclopedia. Finally, apart from ethnocentricity, that fact that it is not as notable as the ACS in America, to Americans, does not mean it is not sufficiently notable for an English language encyclopedia. Jrfw's earlier inexperience notwithstanding, the citations I provided here are more than enough to get the renewed page going. Bottom line, keep it, and keep it separate. Le Prof Leprof 7272 (talk) 17:43, 28 July 2015 (UTC)

All told, there's almost enough sourced content there to fill a paragraph, and even then, it takes a very generous interpretation of what is an independent source. It might amount to "The PBC Foundation is a UK charity to help people with PBC[ref] established by the founder.[ref] They facilitate communication[ref] and raise funds for research.[ref] They helped change the C of PBC from cirrhosis to cholangitis.[ref]" If all we can create is such a very short stub, it is better to simply put that paragraph into the PBC article and provide a redirect. That is the point of wp:FAILN. The existence of other such stubs does not require the creation of more, per wp:OTHERSTUFF. Rather, it suggests that they too should be challenged. LeadSongDog come howl! 20:05, 28 July 2015 (UTC)

REPLACING MISPLACED TEXT (two deletion/merger discussions ongoing, apologies): I respect deeply the impetus for removing unqualified material, but I could easily have a student do two pages on this foundation, since they have participated in recruiting patients for several major European studies regarding PBS, have led interagency dialog regarding many principle concerns of practitioners and patients (re-naming PBC being the most well documented), and are the go-to charitable foundation for PBC for English-speaking Europe, being called on repeatedly to comment on important publications in this area. The fact that mentions in news reports are "passing" is neither here more there; that is the nature of the game, and their appearing at all, in esteemed publications and dialogs, as mentioned above, is the point. Moreover, the point made earlier, that "Most of the refs are authored and/or published by the foundation or founder." is simply no longer true—apart from one appearance, the foundation's own web site no longer appears, and the foregoing list provides a significant start in the direction @LeadSongDog: requested. As s/he said, "Find some [non-foundation citations] and the situation can change." The 7 above are clearly a start, and I found and summarized these, in 15 mins work. Hence, I am very happy to meet others that have such high standards for article quality (rare in this inclusionist venue)—I agree, much stub content here could go. But not this—if I did not believe this cleared the bar, I would not take the time to argue with you. Cheers. Off to more real work. Le Prof Leprof 7272 (talk) 17:57, 30 July 2015 (UTC)

PLEASE HOLD ON PROCEEDING IMMEDIATELY TO MERGE, per dialog with moderating Administrator of the delete/merge discussion

I am advised by the moderating editor of the earlier discussion deciding to merge the articles, that if a consensus develops here not to merge, then it will be acceptable to remove tags, and to continue to allow the articles to evolve independently. Please note that the original merge discussion heard voices from the initially opposing and defending editors, plus two walk-on editors that did not support deletion, but supported merging. I will seek to get a variety of medically related editors, at the Talk pages for conditions, and for corresponding foundations, to come here to express an opinion regarding continuing with the merger. Cheers, Le Prof Leprof 7272 (talk) 17:28, 30 July 2015 (UTC)

Please begin discussion here regarding whether to proceed with the merger

• Note, Doc James as communicated that he has no strong opinion on this matter. See this discussion User_talk:Doc_James#PBC_and_PBC_Foundation. Le Prof Leprof 7272 (talk) 18:37, 30 July 2015 (UTC)
• User:Leprof 7272 perspective: I believe that that the original editor arguing in favour of keeping the articles separate lacked WP experience, both at developing consensus, and at arguing the merits of his case from WP perspectives. I am not much better at the latter, but note:

• that earlier claims in the merger discussion that editors in favour are proxies for the foundation are patently in error—I can find no evidence that the defending original editor is, and I certainly am not (though early prose in the article might have come from such a source);
• that regardless of its origins, articles can become independent, and if important, should be allowed to do so;
• that the evidence, in this pharma-imformed opinion, certainly indicates the notability of the organization (see the 7 bulleted references above and their discussion following, as well as evidence at U.S. PBC organizations, that they turn to the title organization as representative of the substantial English-speaking European and, to an extent Commonwealth, sets of patient needs);
• that better sources are available for the foundation, than have appeared historically—and that the statement that "there are no independent reliable sources about the Foundation identified, as distinct from the disorder" was not sufficiently researched, as the list above makes clear;
• that all sources to the self-published pages of the foundation have been removed, and appropriate sources, or tags have been added;
• that as a foundation, its having served as a go-to organization for patient recruitment and study design advice, and its being sought repeatedly for comment regarding published research on PBC in the U.K., as well as other considerations make this subject, in this informed editor's opinion, notable;
• that any unspoken issue that might be alluded to regarding the noteworthiness of the foundation because its primary population of service is not the U.S., but the U.K., represents ethocentricity we are not allowed to reflect here;
• that foundation and charity articles have distinct reader populations, and the appearance of sets of articles—here, for the disease, and the 2-3 principle global organizations that serve as patient focal points (at least the PBCers in the U.S., and PBC Foundation in the U.K., with wikilinks to the sections of the broader Liver foundations/charities that are relevant—will be useful to our readers;
• and that the receiving article, on the disease per se, is ill-served with regard to focused content, if the underlying idea behind the merger is taken to its logical conclusion (that each PBC-related foundation, including the American PBCers, and the component of each more general organization, i.e., the American Liver, Canadian Liver, and Children's Liver Disease Foundations, be mentioned in paragraph or more length at the main diease PBC article).

In short, I see every reason (i) to demand improvement of the article, via refimprove and perhaps independent source tags, (ii) to remove any remaining prose reflecting the earlier "we" (foundation proxy phase) of article's creation, (iii) and to watch the article for its evolution toward GA encyclopedic standards. Bottom line, I have every hope to see a full 1-2 page article here, soon—not a sparse-information-limited paragraph as an earlier editor disparagingly suggested—and I strongly object to continuing the earlier, 3:1 voted merger (now, at least 3:2), seeing no good reason to eliminate what can easily become a deeply sourced, fully independent, freestanding article. Leprof 7272 (talk) 18:37, 30 July 2015 (UTC)

• User… [Add next editor discussion here.]

• No. The AfD ended with merge and you cannot just "re-litigate" that. I intend to move forward with the merge, per the AfD and its close. You cannot just overturn consensus that way. I was going to do this today. Jytdog (talk) 19:00, 30 July 2015 (UTC)

Please note that nothing precludes development of the discussion of the foundation within the disease article. Should that discussion grow to extend "a full 1-2 page" as @Leprof 7272: forecasts, it will always be possible to fork that content to a distinct article at a future date. Let's maintain a cart-before-horse geometry. LeadSongDog come howl! 21:42, 30 July 2015 (UTC)

• User:jrfw51. I thank @Leprof 7272: for his informed and well-reasoned perspective on this entry to which I fully concur.

I am an infrequent WP editor who created this article in good faith when I recognised that an area in which I am expert (hepatobiliary and gastrointestinal disease) was lacking an appropriate entry. I have no COI regarding the Foundation. I am not expert on the process for deletion or merging, which I found very surprising, especially in its rapidity and the so-called consensus formed from only a couple of editors (who seemed not to have reviewed the citations I gave and showed no knowledge about the patient population served by the Foundation).

As has been very fully described, the Foundation has clear notability, in the NHS and internatioanlly, has been a key part of highly notable research published in the top global academic journals in the area and its work has been covered by the BBC, national newspapers and international organizations.

The disease article is not a relevant place for the health charity to merge into and should remain distinct. Please check other disease pages and see whether they have sections on individual charities.

I ask that you consider again the processes used and whether you have actually formed a true consensus of informed opinion. I welcome other editors with more time than I have who may improve what is only a Stub article (? correct usage?). However there appear many 100's of similar articles that would benefit from better linking and the time of the experienced editors. I fail to see why deleting the entry on a notable charity or merging two articles is the agreed improvement. Jrfw51 (talk) 21:53, 30 July 2015 (UTC)

If the foundation is so notable, the answer is simple, just cite the reliable sources that take substantial note of it. The passing mention in the above references is simply not sufficient, as I explained in the 4:05 pm, 28 July 2015 post above. The general notability guide is not a high bar. LeadSongDog come howl! 04:45, 31 July 2015 (UTC)

•  Done Jytdog (talk) 23:38, 30 July 2015 (UTC)

An organization doesn't need to be "so notable" but just meet WP:GNG as this does. At least the key facts remain following this premature move. Jrfw51 (talk) — Preceding undated comment added 07:57, 31 July 2015 (UTC)

• • @LeadSongDog:, @Jytdog:, @Sandstein: (and @Leprof 7272:): Inspired by the exchange on the talk page of User:LeadSongDog I reread the Five Pillars and looked at WP:DISENGAGE. This deletion/merge process for PBC Foundation moved so rapidly that it seemed as if I was being hounded by "dogs" who would not disengage. I created the article on 12 July in good faith, yet it was nominated for deletion within an hour before it was completed. Once that process had started, you would not disengage despite attempts by me and Leprof 7272 to improve it and to ask for the merge to be reconsidered or at least given more time. It was merged within 3 days.

The article was more complete than so many other Stubs, but I have been taught that if other stuff exists that is not relevant. The notability was evident and was not dependent on self-citations. It could meet all the standards required and again I ask you to look at similar pages for other health charities such as American Diabetes Association, Category:Diabetes organizations or Category:Health charities in the United States. These pages (like most of WP) can have considerable improvements made. I look forward to seeing your activities here -- where I am sure you will achieve the outcomes you desire. I recognize your considerable experiences as Wikipedians and will now go back to a more fruitful life in the real world of biomedicine. Jrfw51 (talk) 10:29, 31 July 2015 (UTC)

Thank you for identifying that. I've tagged American Diabetes Association for repair, but it clearly had sources available, including major news organizations "with a reputation for fact checking". When you find such for the PBC foundation, there may be something to base an article on. LeadSongDog come howl! 13:41, 31 July 2015 (UTC)

Thank you for reviewing this @LeadSongDog:. As you doubtlessly saw, the PBC Foundation had sources from the BBC, Scotsman and the NHS which have "reputations for fact checking" and publications in Nature Genetics etc. Now what about American Asthma Foundation? Jrfw51 (talk) 14:51, 31 July 2015 (UTC)

You're right, AAF was pretty awful too. Addressed, thank you. As to the BBC, Scotsman and NHS statements, you have to look at what they actually said, which was very little about the foundation, in passim, as discussed above. They might have been barely sufficient for a bio of Collette Thain, though biographies of living persons are tricky to source and not really my thing. LeadSongDog come howl! 16:53, 31 July 2015 (UTC)

PLEASE HOLD ON PROCEEDING IMMEDIATELY TO MERGE, per dialog with moderating Administrator of the delete/merge discussion

As I have asked before, per the direction of the overseeing Admin, User:Sandstein, responsible for the deletion/merger discussion, this can continue in discussion, and there is no prevailing broad consensus for a merger. There are two vocal editors on each side, and time needs to be given for others to speak up. The idea that disease articles should all make room for charitable organizations sections—this is the precedent that is being set here—deserves wide discussion. Cheers, Le Prof. Leprof 7272 (talk) 01:55, 2 August 2015 (UTC)

Please stop yelling, Leprof. There was a valid AfD and a valid close. What Sandstein actually wrote, was "Right. So we have a consensus to merge in that discussion. That's an editorial decision. If you go to Talk:Primary biliary cirrhosis and convince the editors there to form consensus that it should not be merged, or unmerged, you're good. Otherwise I can't help you." You don't have anything near a consensus to not merge or to unmerge here. We have two editors pushing very hard against a closed AfD and two other editors. To your point, per WP:MEDMOS articles have a "Society and Culture" section for things exactly like this patient advocacy. Jytdog (talk) 02:07, 2 August 2015 (UTC)

Thank you for making clear, that per the Admin who oversaw the original discussion, that it was not necessary that the merger proceed, that further discussion could take place, and that a differing outcome could ultimately take place.

At issue is your heavy-handed closure of that subsequent discussion, that — rather that AGF, and express respect for two fellow editors — you proceeded to remove the PBC Foundation page, and so to cut off discussion (or at least confuse it), rather than giving us the time needed to arrive at a true consensus.

Also at issue is your poor early treatment of the novice editor, Jrfw51, who was resisting the merger, but was clueless how to deal with your disrespect toward him, and your win-at-all-costs approach to that discussion.

I have said my last at your talk page. If you want things to proceed editorially, the put the PBC Foundation page back up, and let discussion continue. I had placed a couple of general requests for input at other Project pages, and now these folks will find a disappeared page. You are squelching discussion, and disrespecting other editors, new and old. Replace the page, and it remains an editorial matter. Otherwise budget time for the further behavioral discussion. Le Prof Leprof 7272 (talk) 02:42, 2 August 2015 (UTC)

LeProf, as I wrote above, what Sandstein wrote was a) there was a consensus at the AfD to merge; b) you would have to get a new consensus at the other talk page to not merge, or to unmerge. The "not merge" thing is no longer relevant; you could perhaps win consensus to unmerge but you are far from having it yet. The bottom line is that consensus is not a potato that you should throw out the window. btw, the simplest way to win consensus for an "unmerge" (a split, really) would be to the grow the content about the Foundation at the other article to the point where a split makes sense. Right now I don't think there are enough sources to legitimately do that (which is why the consensus at AfD was "merge") but with time... Jytdog (talk) 03:05, 2 August 2015 (UTC)

Recreating PBC Foundation

I thank Jytdog for taking the time to write at length on my talk page User talk:jrfw51 highlighting the process and rules that he has operated by and options that are open to establishing a separate entry. As I see it the issues were:

• Rapid nomination for deletion of an early draft relying too heavily on the Foundation's website.
• Lack of appreciation of the notability of the Foundation in the sources cited.
• My modeling of the article on other Health Charity entries.
• Little engagement in the Debate for deletion -- and I would have welcomed support from other editors I tried to engage.
• Strong opinions rather than engagement in discussion.
• The principal issue is why the merge decision was performed so quickly despite the attempts from July 28 by Leprof 7272 to challenge and delay this. The options discussed on my page by Jytdog should have been considered then with the discussion reopened rather than his proceeding so rapidly with the merge on July 30 -- when Leprof 7272 and I were attempting unsuccessfully to reengage in the discussion. I understand that Jytdog was able to do this and I have now reviewed how this should have been challenged (WP:CLOSECHALLENGE).

Jytdog has now become well aware of the PBC Foundation in performing the merge to Primary biliary cirrhosis#Patient support groups and in the lengthy discussions he has been involved in! I will welcome his involvement along with others in restoring this as a separate entry (WP:SPLIT) when we have more evidence of the so desired notability of this organization. I expect this will occur before the end of 2015. Jrfw51 (talk) 11:49, 4 August 2015 (UTC)