Talk:Patient and public involvement

Removed disclaimers
Hi @User:BuySomeApples,

I removed the disclaimer about neutrality and essay-like style from the article. I did some improvements before but everything in the article is references with secondary research and some of the most subjective parts also come from those (like the word pioneering). If you are still not happy with the article, please list specific issues and I'm happy to work on them.

Best wishes, Adam Harangozó (NIHR WiR) (talk) 09:32, 12 February 2024 (UTC)

Name for concept
I love community science especially regarding clinical trials. I want to ask about and discuss the current name of this article, "Patient and public involvement".

First - those words are nearly meaningless outside of context, as just by hearing those words no one would guess that it had to do with science, or particularly medicine. The sources cited here tie this concept to clinical research, and I think only the the UK. Is that correct?

Related terms could be
 * Community-based participatory research
 * Participatory action research
 * Citizen science

We have categories of concepts titled
 * Category:Citizen science models
 * Category:Citizen science

In my view, the term used typically is tied to a research network which wants to define a concept for their time and place, and distinguish their programs from other similar attempts. When all of these concepts come into Wikipedia we get articles with overlapping info in different names. Distinctions which I see repeated are choices of which sector of the community can give input, ranging from everyone to only the most direct stakeholders - and choices of where to apply the concept, again ranging from everywhere (from civics to science) to only specific fields (like only medicine).

If wiki articles have specific names, then what tends to happen is that we only use sources which use that specific concept. If there were interest in combining these articles, then I think we could. That would benefit wiki because currently the traffic, development, and sourcing is split multiple ways. I do not see an easy way to combine but my instinct is that having multiple different articles is a barrier to understanding and promoting the underlying concept.  Bluerasberry  (talk)  16:10, 26 February 2024 (UTC)


 * Hi @Bluerasberry,
 * Thanks for raising this issue. I just published another article recently which was removed for exactly the same reason: researchers wanted to make the case that ambulatory care in the UK denotes specifically ambulatory cancer care but it's still called Ambulatory Care (capitalised) and it should have a separate article from the existing ambulatory care article but not called ambulatory cancer care. So I do understand and generally try to counter these wishes of institutions and people to carve out their own space in Wikipedia.
 * I think PPI is a bit different because it refers to a specific, distinct method in health research that is although very UK-heavy (and NIHR-heavy) but otherwise not tied to a research network and has international literature as well. I gave the article's title because this is how it is referred most often and I thought patient and public involvement in medical research would be too long but I'm happy to change it. I see how it is related to other topics like citizen science and participatory democracy but I think the length of the text calls for its own article, it would just bloat the other topics. I would say that instead of combining these articles together they need to be contextualised so that readers can understand how they are related. I'll try to do this in the lead of this article and also add more non-UK information. At the same time finding sources on how these different concepts are related is another challenge but I'll look into it. Adam Harangozó (NIHR WiR) (talk) 19:34, 26 February 2024 (UTC)
 * I think we are in agreement.
 * I live in the United States. I am not an expert, but as a personal story, I have been in a community board which reviews HIV clinical trials for about 20 years. I like the model that this wiki article describes, but I do not think that anything comparable happens in the United States. Currently the article has a section for PCORI. In my opinion, PCORI is not attempting to do the activity described here. PCORI does healthcare research, and clinical trials are incidental. I think this "Patient and public involvement" only applies to clinical research design.
 * If you find information about this model's adoption or implementation anywhere other than the UK, then I would be interested to see it. Thanks.  Bluerasberry   (talk)  19:51, 26 February 2024 (UTC)