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

Kitty said:
I agree, but it also needs to be clear that being paid would mean some people couldn't take part. I'd have to report the additional income to the benefits agency so they could deduct it from my income; I did that once, and they stopped all my benefits for five months while they investigated.
Click to expand...
On payment, yes, it depends on the study and on the PwME. There's the option of PwME opting not to be paid, or having their payment be donated to a charity. And of course, it's not feasible for every study to pay for PPI. There are lots of different ways to do things. A Masters student could come to the forum and ask for feedback on their study design, for example, and that would be great.

Trish said:
I think something like a forum where people can contribute to an ongoing discussion as and when able is more realistic for many.
Click to expand...
Kitty said:
As smallish research teams won't necessarily have the skills and resources to set up a new forum, I wonder if it could even be something S4ME might offer to host? If the admin(s) who liaised with them about what they needed and did the setting up were paid at the going rate for their hours, it might still be more economical for the project than having to start from scratch. The team would also benefit from the contributions of members too severely affected to take on a full PPI role themselves.
Click to expand...
Members of the forum committee have proactively offered to help good ME/CFS researchers with PPI admin, for example by setting up private subforums for them with a handful of members with skills relevant to a study to toss ideas around with. I don't think any researcher has taken us up on that idea yet, but it's been really great to see more researchers engaging on public threads here. That all counts, it doesn't always have to be a formal arrangement.

I've had vague ideas of researchers meeting a PPI requirement by paying for a type of forum 'think tank' service provided by volunteer PwME and carers in private S4ME subforums, with the funds going to a forum research fund. But, we are a long way from that.
 
bobbler said:
You mean like share documents with edit?

Or is there an actual forum feature?
Click to expand...
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.
 
Hutan said:
I've had vague ideas of researchers meeting a PPI requirement by paying for a type of forum 'think tank' service provided by volunteer PwME and carers in S4ME subforums, with the funds going to a forum research fund. But, we are a long way from that.
Click to expand...

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.
 
Last edited:
hotblack said:
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.
Click to expand...
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
 
Last edited:
Andy said:
The fact that there will be examples of properly-done PPI should mean that the poorly-done ones should be hard, if not impossible, to justify.
Click to expand...
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.
 
Creekside said:
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.
Click to expand...

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 .
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom