Ok. Recently, I have been approached a lot to be involved as patient advocate in grant applications for cancer research projects. Let's call the entire experience *suboptimal*, so here are a few pointers, for researchers and patient advocates alike.
So, I totally get that no one exactly knows what patient advocacy is. I for starters started thinking about it after someone else called me a patient advocate after I which I felt obliged to have an opinion.
I also get that grants are stressful- I have never submitted anything that wasn't last minute (usually minus a margin, I'm not that crazy, usually). And that people read that 'you have to involve a PA'(= patient advocate *not* personal assistant) just before deadline
If one puts the two together, this just cannot work. If you don't understand an inherently heterogenous and culturally influenced ecosystem, expecting some magic at minus 3d to deadline- that's wishful thinking.
To make this tolerable for both sides, here are however some notes: 1. I'm really sorry but it's really not my fault you haven't read your grant application properly on time. So don't put that rubbish on me.
2. If you send me an email going 'it is SO IMPORTANT TO HAVE YOU ON BOARD' but you neither know which cancer I am in or what my background is, you haven't even bothered googling me. I get not everyone manages linkedin, but google- surely...?
3. We both know that you need a PA/ section for PPI for your grant application. So pls don't try this *you should be so grateful to be contacted as we even talk to PATIENTS* on me.
4. I don't sign pre-written letters of support for projects I haven't seen. Apparently, some of my patient advocacy colleagues do that- nothing spells DOORMAT quite as eloquently. I'm not a doormat and this practice should be outlawed, it's unprofessional till the moon and back.
If you are worried about confidentiality- I *do* sign prewritten confidentiality agreements, we've survived Pharma contracts for years, surely you can't be worse. (E-signatures preferred, let's save some trees)
While you might think PPI is your latest curse (see above, not my fault you didn't read...), there are at least 2 very valid reasons to involve patients and the general public in your research. 1. accountability and 2. better research
There are obviously the ever-green claims to be in patients' interest (I mean, ever seen medical proposal NOT claiming.....?!!) Research is also largely funded through tax-payers' money or donations. So we as scientists are *accountable* towards society.
And the ongoing COVID crisis should give any scientifically trained person pause for thought- Fake News and beliefs along those lines endanger our societies, so if not us, WHO will make Science accessible?
In the context of research grants, I consider that your obligation. Still looking for the English equivalent for the German 'Bringschuld'- an obligation you are expected to deliver. Happy to give you some pointers but this is something I consider YOUR job.
From a patient advocate's perspective, this part is also deeply unsatisfying. While I truly believe in accountability, *holding* people accountable is a different business. First, I don't particularly like it- pointing out things gone wrong is unpleasant.
But even worse, it still means *no* solution for our people and resources wasted but even worse for us, valuable time lost. Time that will cost some of us their lives.
In 2011, I have negotiated a re-challenge with targeted therapy for my husband, after a successful unsolicited in-human experiment (thank god for those pesky patients) and against some totally biased cell-culture experiments on homogeneous cell cultures & exome sequencing
By now, all the arguments I used- heterogeneous tumour, epigenetic mechanisms of resistance, reversibility in acquired resistance to targeted therapy in #Melanoma- are half-way established. *Anyone* who had paid as much attention as me in 2011 could have seen that then.
So what people like my colleagues and me are interested in are the most relevant research possible- in the fastest way possible implemented. And btw, that's positive outcomes for patients, not *publications*.
And before anyone now gets upset with ruffled feathers...pls consider your model system- cheap? You used it since your PhD? Medical grants just larger budgets? Ever validated for clinical efficacy? Also for immuno-oncology?
Hold on, not done yet- you get incentivised by - publications? Your position is dependent on them? You only get grants if you got them (I'd complain to those agencies asking for patient involvement btw- double standards. You are welcome)
Sorry, but there is more- ever learned about problem solving? Anchoring? Sunken cost fallacy? Tools about how to circumvent that? Effective research project management and translation?
I'm not a saint. I'm frustrated. I have buried my husband due to Melanoma in 2012, I'm the only one alive of our group of 6 from back then. I lost a dear friend to uveal Melanoma last summer. I got several friends where I am grateful for every clear scan, every negative PCR.
For us, research isn't a pretty exercise to get you some papers and a position- if that's your measure of life, wait until you or someone you love gets cancer and you will be horrified.
So, why should you involve patients in your research? Basic case, they will keep you honest. You'll be surprised how your research design changes the moment you know that the person you had a beer with last week depends on it
Only stupid people think of patients as clean slates. You'll be surprised what type of complementary expertise patient communities offer (once you realise they aren't clean slates that is of course)
So, for researchers, when you come to us I get what is in it for you, but I want to know what is in it for us? Surely you can't believe that making a patient leaflet about your research is the dream of our existence....
And as this is a group exercise, for patient advocate colleagues- *please* stop supporting research proposals you have never seen. Just because someone claims doesn't mean it's research that will benefit your community #TrustIsGoodControlIsBetter
Also, pls consider going and just 'telling your story'. The research team will feel emotional for a moment. Then, go for drinks. You'll be remembered for 'that awful story'- unless that's your ambition, better working on some strategy.
Our ability to change anything depends on our ability to make constructive suggestions and to ask the right questions. None of that works without knowledge. Now, cancer hits across all groups of societies, so finding those nerds who can teach everyone else is critical for impact
We have to get out off this being thankful for 'being involved' on one side and complaining about things gone wrong the other side. Research with impact IS in patients' interest- so we need to figure out how to best drive this.
No paper cured a patient ever, so simply doing more of the same will not help. Nor will be just hating everything. So what we need to work on are the most effective research models we can dream up- as it's our lives at stake.
Ok. I wasn't done but it became late, so here PART 2. Another classic goes like this: 'we need a PA'. ME- 'ok, so what do you want from me?' 'xxx' ME 'that's dreadful' 'fair enough, so send us what you want?' ME 'MHMMMM, not sure...'
Rather easy to say what one doesn't like, rather not so easy to come up with something that actually work. When we started with our first research project, we frankly had no concept - nor had the rest of the consortium.
Things evolved and now- 5 yrs later- I feel we have finally grown something that feels like a half-way consistent way of thinking about it. Nothing gets better automagically because a patient is sitting in the room
Expecting a non-patient to tell you what to do and as a patient expecting that to hit your innermost expectations that you often cannot formulate yourself is like believing in some type of anticipatory telepathy #NoChance
I think we lost a lot of time believing *someone* would know how this entire patient involvement thing was supposed to work and then everyone was talking about it and we just couldn't see it somehow 🙈
Things started to change the moment we gave on that idea and just started focusing on what we needed- better survival for our people- and what we ourselves could do to get there as fast as possible.
Turns out, a lot. I never got why I as an MD/PhD should organise bake sales to hand over meagre cheques to people to do research whose flaws I could already spot #NoWAY #IOnlyBakeForFriendsAndFamily
Once we got the hang of it, turns out...we got people who are experts in data...in modelling...in start-up thinking...in communication...in business and all of that started making a difference- so I think it's about matching talent and expertise to research problems and think BIG
Any single one of us has a story to make you cry. Just that that doesn't help anyone with writing a better research proposal, sharpening that argumentation or finally controlling that model systems for clinical validity.
And it's personal- my thing are heterogeneity and immune therapy. I do a good game talking about data by now (I like to believe at least) but when the rubber hits the road, I'll send you my colleague who does that for a living- got no intent to make an idiot of myself
If it comes to anything legal- I'll even not talk but send you straight away to that special colleague that always gets us out of a tricky situation....know your limitations, right??? So I think it's about thinking about what we are good at- I mean, REALLY, professional grade
And then, putting that to use. Finding research projects that play to our strengths. Finding colleagues who complement ours. No one has higher stakes than us and we don't need papers- should be easy to collaborate???
Also we have vested interests- we want the smartest research the fastest way possible and benefiting our patients. In Science speak, that's called 'successful translational strategy'. Look up what research agencies all over the place worry about- and we got our job cut out
By the fact I can't put this short you can tell that I haven't fully figured this out either. (One day it'll be that single, elegant tweet 😎. Today's not the day). But there *must* be a more effective way how we go about it
I do not intend to spend my life as the research equivalent of a parking enforcement officer to check whether researchers have written a good lay abstract (bet, change the funding rules and problem solved)- our people are still *dying* and it's not an abstract that will save them

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