Thread by @BettinaRyll

So, working on something that loosely falls under 'patient involvement in research'. Loosely as, let's face it, most of it that just dutty- dutty pat-on-the-head

after years of Pharma THEPATIENTATTHE❤️OFALLWEDO- as long as that's an indication they got a new, usually expensive, new drug for, obviously, otherwise you get dumped at the speed of light-

all this *enthusiasm* of researchers suddenly keen to involve patients in their research projects?! It's definitely not met with anything like that in our community.....

So, all sweet-talk aside, we totally get researchers today need to increasingly involve patients to get their favourite research project funded in the first place. We lobby for that, folks 🙄🙄🙄

That's because 1. moral advocacy seldom works but everyone gets money 2. research funding not leading to sufficient societal benefit (have a guess who funds research) being a BIG issue, both for funders and patients alike

However, when it then comes to the actual involvement in research projects, that's where the real issues start. If you plotted activities against the ability to shape the actual research outcomes, something like this

Loosely following a research project's life cycle, from the project idea over research conduct to final communication, dissemination and exploitation, this will look something like this

Because of the interdependency- the best communication of a poorly designed research project can only ever go so far- the ability to shape outcomes within the research project continuously decreases, the later one gets involved.

Exploitation? Tends to happen after the research project and in a different setting, with a new set of rules. And obviously dependent on what you decide to exploit, be it for e.g. policy or commercial purposes

However, *within* a given research project, have a guess where patient involvement tends to land? First, it gets lumped in with communication and dissemination and even within there, it will end in the dissemination bracket.

Ever been told as a patient advocate 'that's just too hard for patients to understand?!' Never mind you have years of experience of organising constantly over-subscribed conferences and workshops for those very people?

Given material of rather non-impressive quality to 'distribute to your patient community' and if it's just too awful, you spend hours- unpaid and without getting any credit for it- turning it into something less embarrassing?

That's btw why we wrote V2A2- researchoutreach.org/articles/v2a2-…

The point is this: being asked to share information written by others- and if you are in a research project, you are stuck with metrics and KPIs (Key Performance Indicators), so it's not that you got a choice to share or not

Just uses us- and our networks and our reputation- as not much more than bots for other's purposes. Zero ability to shape anything- the project was designed, written, conducted, interpreted and written up by others

and to add to the insult, if you have an EU project and a not-well-design communication strategy, you will be documenting your every tweet in an excel sheet 🙄

None of that will help a single patient, let alone save lives. As my colleague and friend @GilliosaSB keeps saying 'they keep us busy with irrelevant stuff to prevent us from doing what we should be doing'....

So what should we be doing then? Now *that* is the jackpot answer. Because, as it turns out, every time we went to a consortium and said 'no way', we want to do something else, they went: 'sure, just write it up'

Which tbh wasn't what we had expected 🤷🤷 and it's actually causing us some serious headaches- and will be on our 2023 work program for sure. We have always discussed Science and projects with different stakeholders- in any shape and form possible. Unofficially. Officially.

In writing. In discussions. In private emails, on public stages- whenever there was an opportunity. People come for an opinion- well, those who want an honest opinion, the others don't come ;)

We know we can make most research and research projects better, by one way or the other. But getting this systematic and consistent? Looks like we got some work cut out for our community....

And I've been thinking about good examples about why this matters. And that's actually a perfect one: it's a recent overview piece on the gut microbiome and the response to immune therapy, a lot in #Melanoma nature.com/articles/d4158…

By now, there is an awful lot of research and activity going on. However, as the article states, 'the link to food is still not well-understood'. That, from a patient perspective, is simply insane.

We all have to eat. One of the most-asked question on cancer patient forums is: is there any diet I can follow in order to improve my chances to survive this? There is a huge industry targeting cancer patients with evidence-free products, making money on their backs

So what do we think research programs that were designed based on what patients considered relevant would fund? And what would this Nature article look like if that were the case?

And as patient advocates we should have an opinion on situations like these: If we already know today that their solution will be expensive- we know that this leads to inequality in cancer care and outcomes *by design*.

And if we have just read a bit about innovation then we know that constraints matter: we need an accessible, inexpensive solution if we ever want this to have large-scale impact. So it looks like *this* is one of the things we should be focusing on when it comes to research