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

Andy

Andy

Retired committee member
Given that it is becoming more the norm that research projects should have a PPI element, I'm curious to find out what, if any, barriers there might be to getting involved in Patient and Public Participation (PPI) aspects in research projects, and how you might think they could be addressed.

Edit: I am not talking about taking part as a participant in the study but as a representative working with the research team.
 
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The reason I'm not interested is because my relationship with the medical profession is so poor and has been since I was a teenager. I think of researchers as being very like the doctors and nurses I've met in life.

Another factor is that I have spent years dealing with my own health as much as possible, and I've improved a lot of things doctors would have said I didn't even need to fix or weren't actually problems, or couldn't have caused as much pain as I said it did. I don't want something to mess up the fragile equilibrium I have created for myself.

Oh, and yet another point. If researchers asked for access to my medical records I know or assume that there are lots of nasty things about me that I would find extremely embarrassing for random people to have access to.
 
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I recall having seen only very few interesting projects in the past involving Patient and Public Participation (PPI) aspects, but before even being able to consider whether it was something I was even able to contribute something to, I have typically found that the geographical hurdles would have been to large (for instance you have to resident of a certain country). I think in many cases this cannot reasonably be adressed due to legal reasons or grant funding having to be spent locally, but I can also image there would have been instances where this would not have been justified.

Apart from that I think a hurdle for many will simply being be aware of these opportunities. University positions are typically advertised by word of mouth, knowing the right people or by central server lists one subscribes to. I have no idea how I would ever get to hear of PPI projects would they not be mentioned on this site.

I image non-flexibility, i.e. having to be present during certain hours, which one may not be able to promise or commit to, would be an additional large hurdle. In general one has to make promises which one doesn't know if one can keep them.
 
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Arnie Pye said:
I don't want something to mess up the fragile equilibrium I have created for myself.
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So your concern is overexertion from attending meetings with the rest of the research team?

Arnie Pye said:
Oh, and yet another point. If researchers asked for access to my medical records I know or assume that there are lots of nasty things about me that I would find extremely embarrassing for random people to have access to.
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Only participants in a study, where it is appropriate, should be asked for access to their medical records; patients who are part of the study team, as PPI members or otherwise should never be asked this.
 
* ME makes me fundamentally unreliable. High-quality PPI means you have to be well enough to participate in meetings, review documents and make intelligent contributions. I can do some of those things sometimes but predicting what I can do and when is largely impossible. If you've committed to something like that you don't want to "let the side down", and I, inevitably, would. Also, having ME (especially with brain fog) means you inevitably need much more time and space to process materials and make decisions. And second-guess them.

* I can't travel to participate; anything that involves in-person participation - and a lot of PPI does, still, I think? - is out. I also have a high level of sensory symptoms so some materials might be inaccessible to me. Phone calls, video calls, reviewing materials in audiovisual format would all be much more difficult than for a more moderately affected pwME.

* Not quite as relevant to biomedical research PPI, but some research or other ME-related projects sometimes results in controversy on social media, in medical journals, or even in the media (not specifically PPI but e.g. the NICE g/l, which I'm sure may have been stressful for those involved. I have the additional disadvantage that in my family there are a number of people who are academics or members of different professions who might not be too happy at me involving us in ME-related controversy, & when you're dependent on family members...). Also the feeling that it might result in consequences either for my future medical care, or DWP-related consequences; the DWP might assume that if I'm (say) named on social media as being involved with a specific project then I can work at least part-time from home. In an era where DWP monitors the social media accounts of claimants this is not an outlandish possibility.

[ Edited a little for clarity and to remove one point which, on reflection, isn't really an issue. ]
 
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Andy said:
So your concern is overexertion from attending meetings with the rest of the research team?
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I was thinking more of if anyone in a study said I had to take drug X and what might happen if I didn't respond well to it.

Andy said:
Only participants in a study, where it is appropriate, should be asked for access to their medical records; patients who are part of the study team, as PPI members or otherwise should never be asked this.
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I assumed the participation you were asking about was referring to people taking part as subjects, not taking part as researchers.
 
I don't think I could contribute much in my state, but even if it were well-adapted I have never once come across any such opportunity in my country. I don't think there's any research going on here aside from Moreau's, and he doesn't seem to do such involvement. Canada is pretty much a complete void in this regard.
 
Two additional points:

* It's not always easy to determine, in advance, which research is worthwhile and what researchers' intentions are, and whether you're going to have any meaningful role in shaping the research in question or whether they just want nodding heads. Many researchers are obviously working hard & in good faith to help pwME and we all know examples of those. But is it worth participating in PPI for something less certain like, say, the recent AfME care plan or the last NIH study in the hope of shaping it for the better, or do you risk lending legitimacy to something that may turn out to be unhelpful or counterproductive? When you're making decisions on how to spend your very limited energy these questions might be difficult ones.

* It's also not easy to determine, in advance, which researchers would be accommodating to the particular needs of pwME (especially at the more severe end). Some definitely would while others would have little understanding.
 
Nightsong said:
ME makes me fundamentally unreliable. High-quality PPI means you have to be well enough to participate in meetings, review documents and make intelligent contributions.
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This.

Nightsong said:
I can't travel to participate; anything that involves in-person participation - and a lot of PPI does, still, I think? - is out. I also have a high level of sensory symptoms so some materials might be inaccessible to me. Phone calls, video calls, reviewing materials in audiovisual format would all be much more difficult than for a more moderately affected pwME.
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And this, only replace "a more moderately affected pwME" with "an autistic pwME".

Nightsong said:
If you've committed to something like that you don't want to "let the side down", and I, inevitably, would.
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Probably my main fear! I worry particularly about verbal articulacy; it's not invariably terrible, but I've always been better on paper.


So—what would help get over some of that?

1. Not having to come to decisions during live meetings, when my cognitive capacity (which is always rubbish) will be at rock bottom. So for instance, if I'm being asked what I think of something, either send it to me beforehand, or give me time to reflect on it after the meeting, or allow me to amend or add to my contribution the next day.

2. Make all elements that need my participation online, always. Even if the project's based a mile away in my home city, not having to make the journey will improve the quality of my contribution. Some days by 100%.

3. This might be difficult, but think about what confidentiality is required. Could I get perspectives from others on S4ME before I replied, for instance if I wasn't sure about how accessible something would be for people who're more severely affected? Could the project start from the assumption that certain aspects, especially where there are issues that will likely affect individuals very differently, should be offered to the forum anyway—either everyone, or a group of members who volunteer to take part in a conversation?

4. If there are only a handful of places for patient participants, consider allowing 'job-share' arrangements where two individuals share one place. It's not always easy to do, but if it worked it would offer an additional perspective for free, plus cover if one of the pair was too unwell to take part at some point.

I've never done it, so I can't gauge whether all that's so obvious it will already have been considered, or so difficult it'd be a nightmare!
 
For me, if there was a phone or video call, what would be helpful is if a recording or transcript could always be provided for me to review when I was most able to - and whether I'd have time to think about it, reflect on it & compose my thoughts by some asynchronous method like email rather than a meeting in which decisions have to be made quickly. So the option of speaking extemporaneously if I felt well enough but with no pressure to contribute immediately if I wasn't able to. Text-based chat would be better than phone/video calls if immediacy was required; for me, the lower the sensory burden, the better.

Having access to materials to be considered well in advance, rather than them being presented at a meeting for immediate discussion, would also be helpful. When I have to talk on the phone for, say, a medical appointment, I usually like to prepare notes in advance because you never really know how brain-fogged you're going to be on the day.

Something else that would be helpful would be the ability to appoint, say, a family member as a helper or proxy if there was some administrivia to be performed, a vote to be taken, or just to put my point of view across on a video call if I was unable to on the scheduled day?
 
I think participation is key to ensure that rubber stamping is kicked into the long grass , but it's getting to the point where PPI is truly meaningful as a matter of course which is more difficult. True representation means from the genesis of a project and including people who are other than mildly affected and that's what makes it more difficult to achieve .

You only have to look at the recent PROMS and Care and Support plan initiatives to appreciate limitations and pitfalls .
Some of the other PSPs that happened around the same time as the ME one smacked of cherry picked tokenism- clearly seen from the output priorities and number of PPI participants .

It can be done . Decode ME is probably the most inclusive to date, where PPI informed things from the beginning enabling questionnaires to be relevant, better formatted and worded and participation devised to accommodate severely affected . This was critical to the success of recruitment to the study itself.

Online is a necessity , with a phone in link and pre sent info . But there also needs to be some form of message board / online communication ( a bit like here) , where documents can be stored and accessed and informal discussion can take place . This enables people to come to meetings with better formed ideas and opinions- so less talking around and more talking about topics - and for people to contribute when they are able.

There could also be a " buddy" system where participation is a bit like a job share . Whether this is a combination of mild and severe , or carer / advocate and pwME this could widen participation and perhaps help address that feeling of letting people down by not being able to participate .

Time is a key factor . Meetings are generally 1+ hours. Even with a break this is asking a lot of even mildly affected . Lots of shorter meetings would likely not be efficient and rack up costs . I don't know a workaround for this as key decisions have to quorate , which usually involves meetings .

I have had some experience of PPI. It's generally been good . However I do not have ME , so can only go by my experience of being a carer and thinking of what likely impacts would be.
 
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Andy said:
Given that it is becoming more the norm that research projects should have a PPI element, I'm curious to find out what, if any, barriers there might be to getting involved in Patient and Public Participation (PPI) aspects in research projects, and how you might think they could be addressed.

Edit: I am not talking about taking part as a participant in the study but as a representative working with the research team.
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I'll hopefully be able to add more at another point but I've had a quick scan and agree with the responses regarding this needing significant adapation regarding committment and timeframes related to that, normally much longer spread out than people anticipate when they don't really understand the level of ME and not just disability they've underestimated by order of magnitude but other committments that come with being ill.

I think there needs to be clarity about the work that will be involved with examples so people can actually see the level of complexity and type of work in what timescale before signing up. And genuine transparency about how it will be used and not just cherrypicked or other annoying things.

I think @Nightsong has done a good starter of the gist. I'd add in that nothing at 'short' (for us not them) notice, and a guarantee that there will be no creeping on these promises just because someone else has knocked their deadline and they want to make it up somewhere and think they might as well as us to do x in 2 days because they could only send the info out then instead of eg 4weeks before. The stress and disruption that would put onto someone as a dilemma is extreme because it would likely mean other important planned items have to get dropped and the task can't be done if those 2 days aren't 'good', there is no fallback point if you can't complete it.


I would love to think there are some who will do this and one day we could put together a charter and some guidelines of 'if you want to claim it is for ME, including severe ME then you need to plan around the following principles and timings' type document. I never have 'spare' but when you get this ill for as long as I have been and missed out on such important things then it feels important we aren't cut out of things that could further understanding and progress and feels like discrimination.
 
I think a particular point is that I don't want to be in a situation where my experience isn't respected and there is some sort of discussion or debate process based on arguing with either people who are less ill than I am nor staff. It's not on. I'm adding something they don't know about and that should only happen where we are being listened to in a certain way 'to understand'. But also those situations are power-differentials because human nature is for people to win or get their own way in many of them the way they are set up, and quite quickly other participants realise we run out of steam so the way to 'beat us' is simply by attrition.

That would be a horrifically intimidating and damaging situation.

The same can be done with continual miswriting of notes or loads of emails . We've had enough of that in what we've had to live through and it would be incredibly unfair and inappropriate. It would feel like contributions are then being excluded by tactics or whatever if for what you've said only stood if you kept replying to 'extra'.

I think if we can't truly be properly included then the least we deserve is for that to be honestly noted and any tick-box attempts where either severe aren't recruited or the provisions don't really allow them to think about their input or have it properly heard and incorporated need to be honest and say it doesn't represent/cover that severe end.
 
There would be nothing more immoral than inviting someone in who gives what they don't have in good faith, more than was necessary, to find that same level of effort (all of what they had and more) isn't being matched in attempts to understand and represent that fully/it isn't genuine. So those who are asking people but already have a plan of action and just want it signed off ie nothing is really open to change and its a fake process where nothing and no effort could really change anything well.. we would feel so awful to have our name 'used' as if it OK'd something we hadn't just because that person knew we couldn't fight it or prove it.

SO I do think that there should be some blacklist being kept which eventually precludes researchers who do something like this because they now have to tick a box or it benefits them (wrong intentions) string along people to achieve that. Which should be required to be used by ethics boards on a basis that if someone has enough 'smoke' or there are bad enough evidenced examples then they just aren't allowed to recruit and their project is stopped.

Because really it takes so much out of anyone with ME that it's no small insult and level of harm to get someone doing work under false pretences 'it will matter' when their intention was utterly different and it either takes more out of them or had little point to it in the amount of attention it was given.

To me it almost feels like stealing, but worse because of the physical and life impact as people would likely be putting other very high priority things on hold such as medical, dental etc appointments that might be well overdue to squeeze it in so a lot of sacrifice, risk and disruption and some do not seem to respect or acknowledge that and minimise the consequences / amount of what they 'took' from someone.

Some of us might take lifelong additional disability as a risk if we feel this might contribute to change in the future that will bring 'good' that will make life easier in future, or stop worse from happening. If that promise was a lie eg on methods, manageability/safety and whether input was used at all that got people to do something that only made them more disabled then what legally would be the right term for having misled someone into that?

Those doing it might not realise because they think they help by summarising something 'better' for them, or hearing what they want to hear and assuming or not 'getting' that if you make people do things like 'summarise into 200 words' something complex you are making the task so many times harder (a common one).

Plus the classic thinking that if a meeting over-runs or even if something doesn't and 'we seemed fine' that there can't be a situation where we've had to garble out any old thing to get out of there and it isn't our considered view - so 100% agree with @Nightsong 's point about having a 'right to correct' and people not getting annoying with that if we have completely different thoughts or want to scrub what we might have said in a previous situation.
 
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I think finding out about opportunities is a major barrier to participation.

Reduced capacity to do things is obviously a barrier to participation. That makes it especially important that there is information to allow an accurate weighing of the benefits and costs. Lack of that information is a barrier. Examples of information that could help streamline the process include:
  • do you have to be resident in the country that the research is taking place in?
  • 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.)
  • what is the research and who are the researchers?
  • what do the researchers want the patient reps to do? Is it an advisory role, or is the PwME actually part of the team? Will the PwME get to read a draft before the manuscript is made public, and will their input on what is written be welcome? Is the study already defined, with a protocol written? Or are PwME being brought into the study early on to help design it? And related to that
  • what qualifications are the researchers looking for - and hopefully often it will be more detailed than 'lived experience of ME/CFS'.
    • Do they want someone who has been bed bound for a substantial period of time;
    • do they want someone with good links to ME/CFS charities so that they can help with recruitment by liaising with them?
    • Do they want someone who has a really good understanding of the ME/CFS literature and/or politics and/or statistics?
    • Do they want someone who has been a participant in a similar sort of study before?
    • Do they just want someone mostly to tell the research team about their life, in order to inspire the research team to work hard?
    • Do they want someone who can help work out the logistics of the data gathering, in terms of what it is reasonable to expect of people with ME/CFS?
    • Do they want someone with experience in academic writing?
    • Do they want someone with experience in public speaking and media interviews, or someone willing to do those things? i.e. someone to be a representative for the project, possibly publicly sharing their 'ME/CFS journey' and talking about the likely impact of the research? Will the person be, or feel, accountable to the ME/CFS community for the project?
  • How long will the study and the PPI go on for? Is there likely to be an opportunity to continue to be involved with follow-up work? What is the expected frequency and timing of meetings; is there flexibility about how communication is done?
  • How to apply, and what information should be provided?
  • How long will the selection process take, and when will the work start? (e.g. A start date late in the year for a study that only goes with three months might be a problem for me, because the energy associated with social events and dealing with my garden seems to mean that I can't do much else in December.)
 
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Hutan said:
I think finding out about opportunities is a major barrier to participation.

Reduced capacity to do things is obviously a barrier to participation. That makes it especially important that there is information to allow an accurate weighing of the benefits and costs. Lack of that information is a barrier. Examples of information that could help streamline the process include:
  • do you have to be resident in the country that the research is taking place in?
  • 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.)
  • what is the research and who are the researchers?
  • what do the researchers want the patient reps to do? Is it an advisory role, or is the PwME actually part of the team? Will the PwME get to read a draft before the manuscript is made public, and will their input on what is written be welcome? Is the study already defined, with a protocol written? Or are PwME being brought into the study early on to help design it? And related to that
  • what qualifications are the researchers looking for - and hopefully often it will be more detailed than 'lived experience of ME/CFS'.
    • Do they want someone who has been bed bound for a substantial period of time;
    • do they want someone with good links to ME/CFS charities so that they can help with recruitment by liaising with them?
    • Do they want someone who has a really good understanding of the ME/CFS literature and/or politics and/or statistics?
    • Do they want someone who has been a participant in a similar sort of study before?
    • Do they just want someone mostly to tell the research team about their life, in order to inspire the research team to work hard?
    • Do they want someone who can help work out the logistics of the data gathering, in terms of what it is reasonable to expect of people with ME/CFS?
    • Do they want someone with experience in academic writing?
    • Do they want someone with experience in public speaking and media interviews, or someone willing to do those things? i.e. someone to be a representative for the project, possibly publicly sharing their 'ME/CFS journey' and talking about the likely impact of the research? Will the person be, or feel, accountable to the ME/CFS community for the project?
  • How long will the study and the PPI go on for? Is there likely to be an opportunity to continue to be involved with follow-up work? What is the expected frequency and timing of meetings; is there flexibility about how communication is done?
  • How to apply, and what information should be provided?
  • When will I hear if I have been selected, and when will the work start? (e.g. A start date late in the year for a study that only goes with three months might be a problem for me, because the energy associated with social events and dealing with my garden seems to mean that I can't do much else in December.)
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Is the IAG the same as these PPIs technically because if so it makes one think of that lurch those involved with that might be in. Even healthy people would be given the timeframe changes/movement. And to feel potentially over a barrel if you left and the political implications that person might perceive could be possible.

Surely there needs to be an ethics point somewhere of sensible contingency and properly signed off processes that mean the longitudinal time committment can be near accurate, not run on by years. And written down so it is transparent if something runs years late and it's almost a 'constructive' situation that someone might need to leave but be trapped because of ramifications / replacement process in such circumstance not be written into the document (so they can know there will be a like-for-like replacement they can choose).
 
The obstacles are

Finding out about opportunities

Not knowing what I will be expected to do (which is important for someone who must pace themselves or has other limitations).

English is a second language to me and I can't speak it as well, even though I can write well enough. Before applying as PPI member, I would like to know if that is undesirable or completely acceptable.

Not knowing what qualifications or experiences the researchers consider valuable. Does having a long interest in ME/CFS with participation in this forum count as a qualification?
 
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