What stops you getting involved in Patient and Public Participation in research?

I think Nellie is talking about tools like Microsoft Teams or Slack which include a lot of collaboration features. They’re perhaps better thought of as a crossover of forums and chat clients but with document and many other collaborative features. Teams didn’t exist when I was working but Slack had just been launched and was being adopted where I worked. I agree these tools could be well suited for running PPI.

 

That’s a really interesting idea and I wonder if it could also be integrated with as a sort of quality mark process for researchers. I was thinking about the understandable concerns people have and mention of blacklists, while I can see the attraction they also come with risks, not least in how they can be perceived by others. Perhaps an alternative is some sort of approved list or quality mark showing researchers who have demonstrated their willingness to work with and engage with patients in a positive way? This can have the same effect but without some of the risks.

In general I do really like the idea of PPI job shares, or perhaps groups rather than putting the load on individuals too.

And I echo the concerns over privacy and knock ons, particularly with the DWP, but also with others, maybe allowing anonymous participation would help?

Overall it’s been really nice reading what others have said. I agree with many of the points made and it’s great hearing people’s thoughts and seeing lots of commonality. It makes me hopeful in there being people who want to be involved but face barriers some of which it seems feasible to remove.

 

Yes I used slack in 2007 ish when it mainly the messenger type thing. So I know what your referring to I think (being aware that what I used then might have moved on loads over that time ) and can imagine that and the leaps 17yrs might have made possible

thanks for confirming

 

Yeah, I didn't suggest these tools because they were universal loathed at my workplaces, but this is between six and 10 years ago. A lot of the rough edges will have been polished off by now.

 

That's how it should work. However, the existence of properly done scientific studies doesn't make it hard for bad studies to get published. All the bad study needs to do is resemble a properly done study in one or more ways in order to benefit from the respectability of the good studies. I think it's the same as in business practices. Someone develops a practice, such as TQM, and has great success with it. Other businesses jump on the fad and implement some aspects of it, without properly applying the whole philosophy, and when that fails, they place the blame on someone else, because "they implemented TQM, and <good example> shows that it works, so the blame rests elsewhere.

A useful exercise might be to look at the components of a good PPI and think about all the ways that they can be misapplied or abused. For example, "careful selection of participants" should mean selecting ones with a wide range of views, but it could just as easily be abused to select participants that provide only the viewpoint you desire.

I see PPIs as just a tool. It's only as good as the will behind it.

 

That was my thought. Organisations with do sometimes—perfectly good intentions—invest a lot of resources into developing new approaches. By the time they're actually rolled out, though, the cost has been 'reviewed'. What started out as face to face engagement has now been reduced to a badly photocopied information sheet.

 

Things that put me off.

Not feeling I have good enough scientific understanding to contribute meaningfully

Not feeling I have good enough cognitive ability more generally to contribute meaningfully

Fear of not being able to meet the demands of the project (energy, relapses)

My ability to attend (and process information fast enough to respond in) live meetings especially being very variable

Social anxiety, loss of confidence (I get palpitations every time I speak in public)

Being (top end of) severe grade ill so different (greater) accommodations needed to be able to participate

Lack of opportunity - very few studies happening here (UK)

Lack of visibility - no one website or place where they are listed

Advert wording - can be off putting or encouraging eg sounding too onorous or inflexible vs signs of flexibility like ability to accommodate or actively wanting severe patients too, being multichannel or allowing for delayed input etc

One other negative thing was seeing someone in a position of power use a patient group's name to lend legitimacy to a piece of very poor work after ignoring all their input and there being no way to address that.

That said I happened across a study here needing PPI by a very inclusive team which sounded not too onorous and applied. Most of the obstacles seem surmountable having got myself to actually take the plunge .