Thread by @BettinaRyll

After some recent experiences, here some thoughts on patient involvement in research, in particular for my colleagues in patient advocacy. A 🧵

An increasing number of grant agencies ask for patient involvement in research projects. That's usually after political pressure, like when evaluations show that the public doesn't seen the value of innovation and research- like with #Horizon2020

Or when people realise that vested interests of diverse parties prevent progress and that having the very person in whose interest everyone *claims* to act in the room tends to unblock things....

This comes with a particular set of challenges for anyone in patient advocacy. In my mind, they broadly fall into the categories of impact, finances and what's-in-it-for-us aka pls-lets-not-die-of-boredom.

Starting from the end. Most research consortia have no idea about patient advocacy at best and some utterly patronising attitudes at worst.

Surprisingly, they often also don't tend to read research calls properly, let alone be aware of a funder's overall raison-d'être. All meaning, they tend to have overlooked they needed some patient involvement until they FINALLY read the application close to deadline

Which means you get these annoying BOLD CAPITAL URGENT emails. By that time, the budget is usually over-allocated, everyone has their work carved out and the only vague bit is the comms & diss work package

which usually means we get asked something à la 'access to patients, patient information and awareness, unpaid' which is problematic for a number of reasons our community should be acutely aware of

anyone of us who has ever built a true patient community knows that the essential base of it all is trust. Trust that we have patients' best interests as our No 1 priority, trust that we respect and guard their privacy and personal concerns

So- blindly recruit for your trial? Talk our people into donating samples/ data/ their time no strings attached? Answering leading- biased surveys?

Letting you snoop on our community? Tell us what patients should be allowed to know?

There is a very suiting expression in French for this actually....to the effect of 'va te faire pendre ailleurs'.

I obviously cannot speak for everyone, so this is for MPNE- so bad luck if you are in European #Melanoma: our first and foremost responsibility and loyalty is towards our community of #Melanoma patients.

We will not endorse clinical trials that are bad for the patients on it, support the collection of tissue samples that then are only there to serve the personal interests of a single research group or talk patients into sharing data without any benefit to themselves

We will not allow anyone to spy on our community or indiscriminately share surveys with insulting, leading or simply poor-quality questions - been there, done that, not again-

So the bit that is driving me nuts is that we get approached with propositions that are violating anything we stand for- forget it- but in addition to it are so mindlessly boring it hurts, let me explain

I have understood that most researchers are not aware of tools like google or LinkedIn to do basic background checks on people. That's kind of regrettable considering we are 2022 but then, patient organisations can't be held responsible for all that's wrong out there

But it basically means that in any given research proposal, everyone gets to do really cool stuff and learn and publish and build capacity and reputation. And we POs are then supposed to uncritically re-tweet it 🙄🙄🙄🙄

This is actually becoming a real issue. At least in Europe, patient communities are volunteer-based. With everyone needing to involve patients, people are getting fed up with the usual altruism-nothing-in-return-while-everyone-else-is-having fun argument

And that means we need something better. The issue is that patient communities often don't know what good would look like either- but we are working on it.

If we want more and more patient involvement we have to offer patients something in return- and it has to be something *they* value. Tbc

So, we have been noting down why researchers want to engage with us. And why we engage in research. And you will see where the issue is....a slide a made recently:

And now, annotated with the @MPNEurope perspective. In a bit more detail: most medical research is funded by taxes or donations, it uses samples or data that people were willing to give and it usually claims to benefit society. For that reason, accountability matters.

However, from a patient advocacy position, it is only the pull-side of engagement as it comes AFTER the fact. The project has ended, the money spent, the samples used. If something went wrong we can only hope to improve the future, not the project itself. For us, that's too late

So as advocates, we want to be on the push-side of engagement- make research projects in our area as good as we can humanely make them. And believe us, so far we have been able to improve on any research project

Then, user-testing is a big one. It also sounds good 'co-developed with patients'. The issue for us is that LOADS of people want communities like ours to test LOADS of things and that's where the issue starts

Firstly, most user-testing isn't real testing. The product is done, usually developed without patient input based on speculations on what people like us want and need, there is a lot of sunk cost in there and usually zero willingness to change anything at all.

So basically, it's a soft-launch of a product, the only things folks want to hear is that patients not only love it but will actually share it with all their communities and even better, pay for it. What could possibly go wrong?

Fact is that most products coming our way do not meet the needs nor expectations of our community. We don't need more platforms, trial-finders or pay-for-access content.

(In the interest of completeness- we have established, self-governed communities, it's about choosing and accessing trials that are good for you and we are already subscribed to most possible medical news services which you are only going to scrape anyway)

The issue is also that e.g. our community has grown resentful to being asked to 'test' things where in reality, there was nothing to test. That does obviously not mean that e.g. a hospital should not involve its local patient community in e.g. the design of a new service.

But in that setting, the benefit to the patient community is clear: I contribute to make the services *I* will use better- there is a clear return on engagement for the patient in there. We need more of that please.

Then comes the totally self-serving part. Fundraise for us, lobby for us, give us access to your patients to recruit trials, fill biobanks or registries or answer our surveys. This comes with a range of issues for us

In addition to the above-mentioned resentment- there are only so many pdf-email-attached-unattractive legalised-surveys with leading questions and condescending tone any community will tolerate-

there are some concrete other issues for us in there, mainly falling into not-fit-for-purpose, reputational risk and poor strategy/ use of resources.

Stablising rather than improving a system that is not delivering the results patients so desperately need and want- that's not in patients' best interest. How was that again...the definition of insanity, doing more of the same expecting different results?

Then, reputational risk is real. Communities like ours work very hard, with many hours spent learning & debating, talking to diverse stakeholders and testing our assumptions. We will not risk our reputation by uncritically parroting self-interests of other stakeholder communities

We aren't anyone's PR agency, we are an own stakeholder community, with overlapping and non-overlapping interests with any other stakeholder community and we care about patients' best interest first.

So yes, we want access to new therapies- but not at a price tag that bankrupts our healthcare systems and means many patients won't have access. Yes, we want drugs that are safe enough and effective but safe enough means something very different in cancer than for e.g. a vaccine

One can nicely declinate this through the entire stakeholder system. The answer is always a 'yes, but'. While most stakeholders don't particulary like that- everyone loves to claim THEY are the true defenders of best-for-patients to have the moral upper hand in negotiations

after some initial hick-up, one tends to arrive at some somewhat grudging mutual respect. As someone put it 'you are always difficult but then, things start moving into the right direction' which is kind of the best compliment our community ever got. And we won't risk that.

And then comes efficiency. As someone who has worked in Molecular Biology I know how expensive e.g. reagents let alone salaries are. So if I had e.g. 5000 EUR for research, how do you think I would use that most effectively?

Do you think we would write a cheque and hand it over to some #Melanoma lab no strings attached? Or do you think we would rather use the money to train and educate a relevant group of @MPNEurope hubs in Science and research strategy?

5000 EUR in the best of labs won't make much of a difference, even if we had a say in what happened with the money. A group of knowledgeable, research-trained advocates however will not only review research proposals, participate in research projects themselves and select grants

but their knowledge will also keep entire patient communities safe as distributed knowledge is the only effective way to deal with equally distributed fake news. So where do you think we will spend that money?

Which brings me to the last point. When you ask a patient why they engage in research, the answer is invariably something like: better/ faster/ more meaningful research for us. And this is *precisely* why we are there- we still watch our people DIE.

Interestingly, very few researchers and even research funders (in whose interest it really should be) have understood this. To the point it's becoming a positive selection criteria for us- we want to work with people who are passionate about the most meaningful research EVER.

With more grants making patient involvement mandatory, patient communities will be forced to select better with whom to engage and how. Thankfully, we have met some amazing people in the research community. And the best of it? It's not only giving results but it's actually fun 😎