Exploration of the idea of a register of patient advocates

Patient and carer involvement in research. I think it is crucial, especially with ME. With the prospect of increased research into ME due to the rise of Long Covid globally raising the profile of post-infectious conditions, the recent statement made by the UK's Secretary of State for Health and Social Care, Sajid Javid, the results of the Priority Setting Partnership being released as well as the report released by the APPG for ME, and all other advocacy actions worldwide, a question which occurs to me is how can researchers find these patient representatives?

Now, there might be some sort of register out there already that we just need to be aware of and point both advocates and researchers towards, and if you know of one please do comment below. But in the presumed absence of an existing register, how could we establish one? Comment below with your thoughts on the subject.

 

I'll start with the rather basic idea of a forum thread here, that members could post their willingness to get involved, including details such as what level they were prepared to be involved with (document review, participation in a study as a team member), how much time they believe they could offer per week, any relevant experience and education, etc etc.

Pro: Simple to maintain as part of the forum. Explicitly linked to the forum and the forum's reputation.

Con: Explicitly linked to the forum and the forum's reputation.

 

My thoughts are that it is a great idea. I don't know that Forward ME have the admin capacity etc.

I think for data protection etc it would need to be run by the charities, maybe a joint initiative between MEA and AfME?

The PAG, attached to MERC (was CMRC) have terms of referece etc, but I would see this as more of an "index". People with potential to participate. This could include those who are more severely affected, who may be available to respond to specific issues occasionally.

I know that PAG members involved in the PSP, discussed things amongst themselves and then came to meetings or responded on Teams with joint or consensus views. S4ME could maybe provide threads for similar discussions?

 

this is what i always worry about when i see 'patient involment'

I think @Andy idea is great

 

I like to get involved in advocacy but immediately the practical problem comes up if working with others , of how to get involved when my energy is so limited and variable. I tend to do things at my own pace which isn't helpful if it's a team effort with a specific schedule.

 

An important discussion, and not just for ME or medical research. Patient or 'consumer' involvement is increasingly being looked for in all kinds of settings, as is diversity representation (ethnic, racial, gender, etc etc). This is of course well intended and a good thing in principle and can work very well as shown in DecodeME.

In practice it can be quite difficult to avoid the whole thing turning into a tick box exercise with research teams just engaging a token patient/consumer of convenience. That's partly because some researchers don't want the perceived hassle or don't see the value of genuinely engaging with potentially critical non-scientists. And partly because suitable candidates can be hard to find for all manner of reasons, not least because there's a limited pool from which to draw.

A good patient representative should have at least a basic understanding of the scientific method and, importantly, the confidence to ask 'dumb' questions at every turn. They should also be plugged into their wider patient community so they don't just represent a personal or narrow point of view. That's a lot of pressure on one person so I'm wondering how this could be made into a group thing where a patient rep can say hang on a minute, I'm just going to seek some feedback from the wider community. Tricky if the research team doesn't want too much info leaking out.

Then there's all the practical stuff around being well enough to participate in a meaningful way. As an experiment I once put my name forward as a health consumer representative at my local health authority. I was interested to see how far they'd go in considering accommodating my needs. You won't be surprised to hear that didn't work out. They were all set up for wheelchair access and vision and hearing impairments, the 'classic' disabilities. They had no idea what to do with someone unable to participate in lengthy video calls at set times and who wanted to conduct all communication in small chunks of writing instead. I expect many research teams will have similar constraints, real or perceived. DecodeME could really serve as an example here. I can't recall if it was part of the plan to publish on how the study went about including patients? That could be really useful for others to follow.

Some sort of registry would be good. For starters it could provide guidance to interested researchers about the sort of accommodations they may need to consider making to allow pwME to participate.

Some sort of vetting function is probably necessary. Not sure how patients could be vetted to exclude those who only wish to pursue a personal agenda. For the researchers it could be a matter of posting their academic credentials and a project description and patients could then register their interest and availability.

I wonder if some such function could be tacked onto the Solve You & ME registry or the biobank? Basically a place researchers are familiar with because they already go there for samples or data. That probably would also feel safer from their point of view than engaging on some unknown quantity of an Internet forum, unless they already know somebody here personally.

 

It was not, as far as I can recall, part of the funding application but, yes, publication on how DecodeME went about patient and public involvement is something that is planned to happen.

 

Similar idea, maybe worth reaching out and build from the same base? They already have ME/CFS as a topic.

https://twitter.com/user/status/1481406365700661265

 

Thanks. There obviously could be a difference between someone prepared to talk to press and someone who is interested in being involved in research as a patient rep. I also have concerns that so much identifying information is made available to anybody who clicks through to that site, I would want to see far more data protection in place than they are using.

 

I like this idea, but the real difficulty is appropriate matching and also marketing our abilities - some of us have quite incredible amounts of knowledge (compared to an average medical practitioner or journalist, or even scientists), but lack traditional qualifications that can be used to verify it.

 

I can see potential problems with having a register - who decides who is appropriate? Can anyone put themselves forward? What is to stop the register becoming a list of people with very strong opinions, that perhaps might be of dubious validity?
Personally, I would be happier to see a list of organisations to be approached. That way, the collective decision of the organisation could perhaps decide the most appropriate person for each task/request….?

 

There seems to be two defining issues: data protection and inclusion/vetting.

Data Protection:

The UK General Data Protection Regulation (GDPR) applies to anyone - individuals, organisations, companies - that holds personal data. In the case of individuals there's a "domestic purposes" exemption which means that our everyday lists of contacts, friends, family work etc isn't subject to the GDPR, however an individual holding a detailed list of other people's data for a non domestic purpose would be covered by the GDPR and the list holder would be subject to all the legal requirements of the GDPR for the purposes of the list. So the list doesn't have to be held by an organisation.

That said, there remain questions of trust - who 'owns' the list ? how is the list managed ? what happens in the event that the list holder is unable to maintain the list ? etc For these purposes it would seem that the most practicable solution is for the list to be held by a legally constituted organisation with an established GDPR policy. It's important to recognise that this isn't simply a list of names - implicit in inclusion on the list is the health status of the individual, with all that comes with that.

Inclusion/vetting:

The potential difficulties with this are somewhat dependent upon how the list is to be operated. In turn that depends upon the trust relations that are explicit/implicit in operating the list. There are three orders of potential trust relationships - a) between list holder and listee, b) between list holder and researcher c) between listee and researcher.

How these relationships are approached/managed will define how the list is operated. For example, is the list holder acting as a disinterested introduction agency - simply passing on researcher details to list members and offering no guarantees to researchers as to the competence, capacity etc of any respondent from the list, and in reverse offering no guarantee of a usefulness of any contact made with a researcher ? This might all seem superfluous but it goes to the heart of the validity of having the list - if listee and researcher have prior expectations that are not met the whole process quickly fails.

If the list holder is to act as more than just an introduction agency, then what level of vetting and/or requirement of listee details would be required ? Would the list holder be empowered to limit the number of 'introductions' to avoid the same individuals monopolising opportunities ? Or to even exclude individuals from the list entirely ? How would such decisions avoid claims of discrimination ?

The way I think this might work is:

a) the list to be managed by an established organisation.

b) inclusion on the list would be limited to current members of organisations that are themselves members of the ForwardME group.*

c) researchers would simply be offered the opportunity to have their project advertised to the list membership, no guarantees would be made that any contact may result or that those contacts would be suitable for the project's purposes.

d) the list holder would undertake to verify that any advertised project was part of a legitimate UK based research organisation.

e) the listees would be informed that the list holder makes no guarantees about how any response a listee may make to an advertised project will be received , other than that the project is legitimate.

* I know this may not be welcome but the list holder needs to have some means to verify the real world identity of the list members, and establishing an affiliation with a known organisation is a short cut to this. Beyond this I don't see any possibility that 'vetting' could not fall foul of a variety of discrimination issues.

 

I second @Trish.

Also given the variability of individuals’ health people with ME and indirectly their carers on such a list might need to drop in or out on a regular basis.

I think it is more practical to identify charities or patient groups willing to advertise the need for volunteers for particular projects and/or willing to provide a named individual represent their organisation.

For example we, S4ME, could consider saying we would welcome researchers contacting us either to advertise for patient representatives/advisors or asking us to nominate a representative if we felt the project warranted our involvement as an organisation. Alternatively we might suggest other local or national groups as relevant to project’s location/country or topic.

 

But could be hugely useful if researchers approach the forum, asking us to recommend someone as you suggest they might later in your post.

Why? Or perhaps define "constantly". My idea for a register, in whatever form it might take, is that it is up to the potential patient rep to take up, or not, any opportunity that is offered to them when it is offered to them. That way they can choose to decline the opportunity if they aren't doing as well as they were when they initially signed up to the list. I agree that a semi-regular request to those on the list to update their details where appropriate would be useful but constantly implies far more work than would seem to be necessary.

 

With S4ME as the list holder, and where the list is comprised only of S4ME usernames, there would be no additional GDPR concerns, however there would still be questions around a trust relationship between S4ME and researchers. What is it that researchers are getting from what is in effect an invitation to those on the list to become involved in the researcher's project ? If the only data S4ME hold on the listees, then S4ME couldn't even vouch for the listee's real world details, so why have a list at all ? Why not just post a notice in the members only area.

Clearly for S4ME to discriminate against individual members by excluding them from the list would be highly problematic.

 

indeed. What happens when

'heLPPRACTIONerfgun' applies?

For those not getting my meaning i mean when a BPS fan/LP practitioner joins the forum and puts themselves forward.