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

Maximal flexibility around PPI activities, including the ability to use a proxy, support to contribute in advance or afterwards instead of during a meeting, and the acceptance of PPI members attending meetings with the video off.

Maximal notice of activities, preferably scheduling meetings well in advance, eg setting the schedule annually.

Total clarity about the project and the PPI role and expectations, so patients know they cannot be used to give cover to poor projects.

University / funder / regulator supervision of PPI arrangements (not yet routinely offered) so there is a place where patients can complain if the PPI breaks down, in the same way project participants can complain.

Public acknowledgment of PPI members alongside IAG members where PPI members are performing an IAG-like role.

Clarity about PPI funding offered and the source of the funding.
 
Some thoughts which echo what some others have said.

I can’t attend meetings. In person is a complete impossibility. And the often offered ‘easy option’ of phone or video calls still completely rules me out. I can sometimes listen to a call for 10-15 mins but anything interactive is much less and very difficult. I also cannot review long documents easily. Sometimes I can get my thoughts together for a post like this, others not. I often have feedback for projects I’ve been involved in as a participant (e.g. CureMe and DecodeME) but it can take me months to get those thoughts together and written down. And whether I am even up to any of this is unpredictable so flexibility is really important.

Passive stuff works well, interactive and engaged as you are expected to be for these things is a no no. Webinars from DecodeME I listen to at my own time/pace after rather than joining live. Even sporting events I enjoy I rarely listen to live but record so I can stop and start.

People running things would need to really get ME and this seems rare. The methods of communication, commitment and flexibility are key. Projects have deadlines and often fit around tight academic and budget limitations and deadlines just don’t work for many/most of us.

Ideas on how things could work for me
  • have multiple patients involved with no hard dependency on any one of them, ensure people aren’t left out but give them a safe option to opt out of individual decisions while staying involved
  • use non-realtime methods of communication (forums, slack channels, recorded messages, etc)
  • ensure audio of everything is available (especially documents, but also any meetings/discussions which are relevant)
  • give plenty of notice to key dates, allowing participants to choose when they do what they need to and have the time to do so (even as a participant having information and actions at the last minute or ‘just in time’ has been difficult)
  • flexibility around individuals needs as we are all different (I prefer audio while paper options help some for example, some prefer video calls, etc)
All of this is actually pretty easy technically. It just takes a little thought and organisation and thinking differently about things.
 
In my mind, PPI exists to make sure the interests of patients and the public are adequately represented.

The BPS research into ME/CFS is an extreme case showing wasteful and harmful research is that is not based on collaboration with patients.

PPI is needed to ensure that a research project doesn't end up something that only benefits the careers of researchers and the business or political interests of the funders. This kind of research risks having no benefit to broader society.

A more typical case is probably just a researcher that, due to not being a patient, and due to being so focused on their work, doesn't realize they're doing things in a way that isn't helpful for patients. It's not easy to put oneself in the position of patients.

Now, to get back on topic, the researcher projects that really need PPI are probably the ones that will never allow patients to have any meaningful influence. These will not have PPI, or something that can pass as PPI but is deliberately ineffective, e.g. a patient advisory group composed of people who are pleasant and agreeable, have little experience, little knowledge of historical miscondict, and are assigned tasks that cannot conflict with the true aims of the researchers.

When deciding whether to participate in PPI, I would like to see signs of researchers being genuinely interested in constructive criticism, and an explanation of how PPI members will be able to influence the project, and an explanation of why PPI is needed for this particular project.
 
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The point @Hoopoe makes is really important. People that get ME are rare, so if not this then those running the projects need to be those open enough to really listen. Worst is probably people who think they understand but don’t or are unwilling to listen or see/do things differently.

I saw this in my previous career. We’d often get playtesters in or try wider community engagement when making games. It’s important to get a wide range of views not be set in your ways. Be open to doing things you haven’t thought of or had even discarded. And generally really treat it as a learning exercise and be humble, flexible and willing to be wrong, surprised and change. That’s when it worked. When it didn’t work was people using it to prove a preconceived idea, just as a box ticking exercise or as marketing.

All these things I think are valid just as valid for scientific research.
 
One of the biggest barriers, I think, is time. Asking pwME to contribute meaningfully to discussion and decision making in rapid real time meetings will preclude many.

Group emailing is inefficient. I think something like a forum where people can contribute to an ongoing discussion as and when able is more realistic for many. So a meeting that needs to come to a conclusion in 4 weeks could be held as a 4 week period of forum type discussion facilitated by the lead researcher with all materials and a clear list of decisions to be made, being made available at the start of the 4 weeks. Also there could be ongoing threads where all the research team including the patient members share informal discussion of issues as they arise.

There is also the problem that many pwME who only have experience of mild to moderate illness may not fully appreciate aspects of more severe ME/CFS, and many may not understand the flaws in research such as we discuss on S4ME.

When my ME was mild and I hadn't any real contact with other pwME, and had little experience of ME/CFS research discussions, I would have been only of limited value as a patient representative on a research project. I think some sort of training for PPI participation could be useful.

I volunteered once for what I thought was intended to be meaningful PPI, but was rejected on the grounds that they weren't interested in people with experience of the sort I have from S4ME, they just wanted people to try out draft versions of their questionnaire, and would choose their people randomly from anyone who applied.
 
Frankly, I'm too severe. Im at the milder end of severe but can't keep on top of my own admin and medical care let alone commit to anything like that. I wish I was well enough to do things like this and advocacy but the sad fact is that when you're severe the cost is generally too high.
 
Hutan said:
will you be paid (I think it is a sign of respect if patient representatives are paid something. It also lowers the barrier to participation. If I can earn some money that I can use to buy food that is easier to prepare, or get someone to do a bit of house cleaning, then I have some time freed up to participate
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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.

They demanded several months' hard copies of all my banks and savings statements, which is complicated when you receive them electronically. As well as having to sort that out with several banks, I ended up spending two days making a spreadsheet with my exact daily cashflow for those months, to show how many days I'd exceeded the income threshold.

My total benefit overpayment was £43. They knew from the outset it would only be a small amount, but they were still prepared to leave me without income for months on end. If I'd had no savings, it could have left me evicted from my home, in default with all my utility suppliers, and with a blighted credit record that would take six years to repair; if I hadn't reported it I could have ended up with a criminal conviction for fraud.

It can be hard to understand the sheer Orwellian absurdity of social security systems, specially for people who've always been able to earn a living or who have that rare type of occupational pension that pays out if they become too ill to work. Thing is, neither of those will apply to a lot of pwME.
 
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Hoopoe said:
In my mind, PPI exists to make sure the interests of patients and the public are adequately represented.

The BPS research into ME/CFS is an extreme case showing wasteful and harmful research is that is not based on collaboration with patients.

PPI is needed to ensure that a research project doesn't end up something that only benefits the careers of researchers and the business or political interests of the funders. This kind of research risks having no benefit to broader society.

A more typical case is probably just a researcher that, due to not being a patient, and due to being so focused on their work, doesn't realize they're doing things in a way that isn't helpful for patients. It's not easy to put oneself in the position of patients.

Now, to get back on topic, the researcher projects that really need PPI are probably the ones that will never allow patients to have any meaningful influence. These will not have PPI, or something that can pass as PPI but is deliberately ineffective, e.g. a patient advisory group composed of people who are pleasant and agreeable, have little experience, little knowledge of historical miscondict, and are assigned tasks that cannot conflict with the true aims of the researchers.

When deciding whether to participate in PPI, I would like to see signs of researchers being genuinely interested in constructive criticism, and an explanation of how PPI members will be able to influence the project, and an explanation of why PPI is needed for this particular project.
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There’s a reall issue there isn’t there - constructive criticism and the belief of some that they can behave in s certain way when they don’t like what they hear and then try and blame that outburst on the patient - all because they want to invalidate the input because it wouldn’t work for them

I can imagine how intimidated certain individuals would make someone feel when they had to say the one thing every 3months and no survey longer than 20 non ambiguous straightforward questions that are tested as well-written to some people

I think maybe as you’d get focus groups run by independent people when it’s about someone’s new product etc there needs to be an independent ensuring safety and who would report investigators if they ignored the feedback they’d been asked for

there is an attitude problem and behavioural issues with certain researchers and indeed whole areas towards pwme which seems to be based on their own problems of how they act to others to get their own way and it connecting with certain areas of research.

Pwme are particularly vulnerable because they believe they can tells fibs about ‘who started it’ and no one will investigate properly ti call them out. So if they want to involve vulnerable patients safely there does need to be a handbook that their oversight should have to read - much if it needing to be about the problems of researchers themselves and their behaviour to watch out fir and cover-up fibs that tend to be common, so you don’t have the same playbook being run thru everywhere
 
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.

They demanded several months' hard copies of all my banks and savings statements, which is complicated when you receive them electronically. As well as having to sort that out with several banks, I ended up spending two days making a spreadsheet with my exact daily cashflow for those months, to show how many days I'd exceeded the income threshold.

My total benefit overpayment was £43. They knew from the outset it would only be a small amount, but they were still prepared to leave me without income for months on end. If I'd had no savings, it could have left me evicted from my home, in default with all my utility suppliers, and with a blighted credit record that would take six years to repair; if I hadn't reported it I could have ended up with a criminal conviction for fraud.

It can be hard to understand the sheer Orwellian absurdity of social security systems, specially for people who've always been able to earn a living or who have that rare type of occupational pension that pays out if they become too ill to work. Thing is, neither of those will apply to a lot of pwME.
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Yes and yet people lumbered in this situation are important yo include and there should be ways around this such as vouchers (how does that work re benefits?), and we all need things like food shopping, or potentially other useful items (good reclining electric wheelchair, can’t think if other things! But maybe we can come up with some)
 
bobbler said:
vouchers (how does that work re benefits?)
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I'm not sure of the law, to be honest, but I'd be a bit surprised if it weren't an issue to receive something of more than token financial value.

I know market research incentives don't have to be declared for income tax. I used to do a lot of it, and once received a £500 incentive plus peak rate train travel, taxis, and a night's accommodation in an accessible hotel in central London. It probably added up to at least £800 all told, and as I was self employed at the time, I checked it with HMRC.

I'm not sure DWP would take the same attitude, though! There's also the capability for work issue that someone mentioned earlier in the thread. Being in the ESA support group means you're considered incapable of work, and no one would want to put that (probably painfully hard-won) status at risk. The fact that this isn't a job, and you could back out if you hit a really bad patch, and anyway much of the work could be done in 15-minute bursts, in bed, whenever it suits you, will be immaterial.
 
What does being in a PPI involve? Does it require reading lengthy tedious documents? Following a video conference of lengthy tedious discussions? Is the PWME required to make important judgements about details on the spot? We're certainly unreliable for that.

I do see a problem with PPIs: some properly-done ones will become the showcase to justify poorly-done ones.
 
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. So a meeting that needs to come to a conclusion in 4 weeks could be held as a 4 week period of forum type discussion facilitated by the lead researcher with all materials and a clear list of decisions to be made, being made available at the start of the 4 weeks. Also there could be ongoing threads where all the research team including the patient members share informal discussion of issues as they arise.
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I think this is a really good idea.

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.
 
Trish said:
One of the biggest barriers, I think, is time. Asking pwME to contribute meaningfully to discussion and decision making in rapid real time meetings will preclude many.

Group emailing is inefficient. I think something like a forum where people can contribute to an ongoing discussion as and when able is more realistic for many. So a meeting that needs to come to a conclusion in 4 weeks could be held as a 4 week period of forum type discussion facilitated by the lead researcher with all materials and a clear list of decisions to be made, being made available at the start of the 4 weeks. Also there could be ongoing threads where all the research team including the patient members share informal discussion of issues as they arise.

There is also the problem that many pwME who only have experience of mild to moderate illness may not fully appreciate aspects of more severe ME/CFS, and many may not understand the flaws in research such as we discuss on S4ME.

When my ME was mild and I hadn't any real contact with other pwME, and had little experience of ME/CFS research discussions, I would have been only of limited value as a patient representative on a research project. I think some sort of training for PPI participation could be useful.

I volunteered once for what I thought was intended to be meaningful PPI, but was rejected on the grounds that they weren't interested in people with experience of the sort I have from S4ME, they just wanted people to try out draft versions of their questionnaire, and would choose their people randomly from anyone who applied.
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And not that random/new. What I'm slightly hoping is that there might be some things from eg the market research society where formats like this have been tried - and if not why not get in touch with them? It sounds so pertinent for ME research, plus an interesting development for them (including to maybe help with some guidelines in general for when pwme are involved in other things/the more general)

Years ago I was trialling out 'online' focus groups that were by writing on a thread ie not 'video'. They were a different beast to in-person but was shocked at the different pace of them in the number of questions you cover because of the nature of you ask a question and everyone replies simultaneously then can read each others' input, without it being a round-robin. The fun bit is then how you write up so much (compared to what you'd get from a slower in-person group) but at least you've the transcript to begin with.

Given with ME what level I'm able to think at when having to multi-task because everything is simultaneous ie if I'm having to reply to a question in person in a certain timeframe, having processed that (and might be sitting up and other things) there is the auto-response to just say something.

So there is definitely something to do with not being something based on someone else's timeframes. Because even if we squish a gap in our lives to do something, we actually need that to be when we are properly up to the task and we don't have the control of our lives or bodies to guarantee that for someone else's timetable.

A forum type format is good because it is the one thing that allows for that time-zone difference as people can come in and read the full relevant trail, post replies to what is relevant etc.

I think some of this is ME-specific but a lot of it is the topic-matter and how personal it is, how much we've been gaslighted (and carry the burden for other people's issues, feelings and sensitivities), how complex the illness is adds to how you might think on the same question in a different way another day and come up with different answers.

Or small changes in wording make huge differences to the reply - such as the 'can't' and 'can' coming with endless caveats. So it would need someone absolutely double-checking their interpretation is what was actually intended.

The risk again is cherry-picking and people being aware of needing to weight and understand different severities and situations so they don't just go with 'majority said' type standard questions and interpretation when if eg something is about accessibility they need to get that if they want to say they cover severe they need to be listening to that ability-level (or those who have been there).
 
Kitty said:
I think this is a really good idea.

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.
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I can see the thinking, but imagining a list of pros and cons (for different stakeholders eg those doing the forum vs us vs researchers), and thinking through any risks/issues would be extensive enough if this is considered seriously it would make sense to have its own thread.
 
Kitty said:
I think this is a really good idea.

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.
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With collaboration tools like teams it should be possible to do groups of people to discuss topics, comment on documents. It’s what they use at my old employer to work on projects.
 
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