Patient Engagement In Research: Why Do We Do It At All?

I came across this & found it interesting.

"So my talk today is not about the importance of patient engagement in research. Rather, I’m interested in a broader, more critical discussion.

In addition to asking ‘how do we do it better’, I propose we also need to ask ‘why do we do it at all’ – which is to say, what is the purpose and the meaning?....

http://johannesen.ca/2017/11/explor...ngagement-pediatric-neurodisability-research/

 

Hard going, only managed a third or so of it before I gave up

 

Consider the well organized, patient led, ACT UP approach. The AIDS/HIV patients were on the inside (seat at the table with the NIH researchers), while the mass protests happened on the outside. This inside/outside approach, was their model of success.

So why bother at all? Because 100-200 million PwME globally, are impacted every day. Doing nothing is irresponsible.

 

Quite a bit of discussion about bias in terms of education and socioeconomic status:

• "self-selection bias leads to the formation of a particularly homogenous group of well-educated, articulate, wealthy people who can afford to volunteer, and who consider their contributions to be charitable"
• "Patients who are invited into the inner circle already come from a socioeconomic demographic that allows them – us – to further take advantage of own special status."

However, unless I missed it, no discussion of bias towards the less severe patients, as the more severe are too disabled to participate. This is particularly true in ME/CFS.

 

I think it's a fairly good article. Token patients benefit no one. I especially liked these two suggestions for making patient-engagement meaningful:

 

I find the idea of patient review boards to be especially interesting. Perhaps S4ME could form one?

There doesn't seem to be an official definition, but these are a couple descriptions of patient review boards:

 

What an absolutely fascinating idea! I love the idea of a group that are selected by the patients, rather than by the researchers to best suit their agenda.

I wonder how we would go about doing such a thing?

 

The forum is currently structured as being governed by a management committee, with various tasks delegated by it to specific teams (admin, moderation, finances, knowledge resources, etc), so I think we could add a patient review board as basically another team. Similarly, we could solicit volunteers for the review board from the forum, with oversight by the management committee.

Some researchers wouldn't go anywhere near patient reviewers that aren't carefully selected for having the "right" view. But the more rigorous and transparent researchers might be interested in having a truly independent patient review board available without any fuss.

Membership could also rotate regularly if there's enough interest in contributing, or hopefully at least involve enough people to function even when some members are out of commission.

 

I am with you 110%, and feel you are the best person to own and drive this.

 

Yes. If we made it a "thing", then we could raise questions about the motives of a research groups who choose to select their own patient advisory group.

Maybe its bigger than S4ME. Maybe it should include representatives from all patient groups (that could cause grief for those looking for an easy ride with AfME). Maybe it needs to be different depending on the country? I don't know.

 

The latter, I'd suggest. Possibly even to go so far as to review research and then send the reviews unsolicited to the researchers. As part of the typical discussion here we tend to dissect studies anyway, so it's not like it's not happening anyway, and if in doing this, we improve the study, even without any official acknowledgement, then we all benefit in the long run. And after a while, the smart researchers will start coming to us, to involve us in the design. That's my theory at least.

 

Ping @Penelope McMillan

 

Interesting that NICE, at the recent workshop were stressing that they are now using the term "lay member", rather than "patient representative". They also stated that these lay members would be sharing their own views etc, not necessarily those of a group. Especially not any group that is full of vexatious militants.....(no, not really!)

Applicants for this role do not even need to belong to a stakeholder group.

Is this so that they can recruit any individuals who have an interest in the illness and don't even need to be a patient or carer to the committee. For exact terminology of guidelines re applicants please see @Valentijn or the NICE Guidelines as I do not have the info to hand.

 

Regarding patient review boards...

My understanding of the research process is not sophisticated in the least, and I'm not sure of the order that things happen in. So I'm going to assume the following and will agree in advance that it is a travesty of the real thing :

1) Researchers will decide on a subject and hypothesis to do some research on.

2) They put together a proposal and apply for funding.

3) If they can convince the potential funders that their research is worth doing they will be given money.

4) The researchers put together a detailed protocol.

5) The detailed protocol (I assume) also has to be approved by the funders.

6) The detailed protocol (I assume) also has to be ethically checked and peer reviewed.

7) Research gets done.

8) Papers are written and peer reviewed and re-written where necessary.

9) Papers get published.

In an ideal world a patient review board would get involved at a couple of points.

I would suggest that oversight by a patient review group would be helpful between points 5 and 6. Why go further with research which is going to be an expensive failure (in the opinion of patients) that wastes money if it falls at the first fence as far as patient reviewers are concerned?

Also, patient review would be helpful between 8 and 9.

BUT (!!!) I realise my thoughts above are just airy-fairy nonsense. Research is very often 100% confidential right up until the point the papers get published on a particular day with a fanfare, press release, possibly even a news conference. Researchers and funders are not going to share their precious research ideas and results before then with a bunch of patients, no matter how clued up they are.

So it then follows that patient review groups will only be allowed to get involved after point 9. If it (the research) turns out to be the same quality as the PACE trial - and costs £50,000, £500,000, or £5 million - it will be defended to the hilt, and patients will be ignored if they think the research is flawed, because to dump/retract research would be costly both in money and careers. Who would fund research if patient criticism became a regular, high profile, valued, trusted and very public thing after the papers were published?

It seems to me that a huge amount of research is done these days with the goal very firmly in mind before it ever starts. How much research is done with the people involved honestly not knowing the result beforehand? I accept there must be some. But so much research can be manipulated beforehand so that the "right" answer comes out the other end. And again - allowing patients to interfere would be seen as a disaster because they aren't all completely blind. (Edit : And patients can't be trusted not to spot the flaws in the logic, the fudging, the manipulation of results etc.)

 

This is interesting. I'm sure it couldn't possibly be because it will be easier to dismiss the views of a lay member speaking on their own behalf than those of a patient representative speaking on behalf of a group. Now that we have lay members, where are the patient representatives supposed to go? Or do they just get rebranded and downgraded? So much easier to make personal remarks about a lay member. I wonder who thought of that? Brilliant.

 

Yea, it seems to mean they can claim they consulted patients, but then if anyone asks if those patients were representative, they have an instant defence - "no, no, we never said they were patient reps, they're just lay members".