Bettina Ryll Profile picture
#Melanoma patient advocate, MD/PhD, in want of patient-centred research. Member of the first EU Cancer Mission Board. Views are totally my own.
Sep 6, 2023 12 tweets 2 min read
So all this innovation blabla- maybe check out what some patients are doing.... Right now it's fashionable to outsource care to the patient, also in cancer. Obviously, always made to sound great. Also obviously, the primary motivation is to save cost to the healthcare system.
Oct 23, 2022 19 tweets 4 min read
I just re-read what @GilliosaSB wrote about health data and what it has to do for patients. I can't help but feel that 99% of the #EHDS debates are missing the point. 🧵… First, it usually starts with the general hype about all that that magic EHDS will deliver for us. Have you ever seen what real health records look like?! Some places in Europe still don't have digital ones 🤔🤔🤔
Aug 10, 2022 18 tweets 4 min read
If you want to keep patients safe from 'fake news', stop using baby language. I've been challenged to write down how we actually *do* things in @MPNEurope. Considering that it was me who started it, that's fair enough, I guess. It's also utterly painful. I already knew I'd never make it in one go, so my New Year's resolution was 1 blog a week...
Aug 8, 2022 7 tweets 3 min read
Info on the patient engagement plan-… you need to document how you involved patients when formulating the research question, wrote the proposals and will involve them during the project implementation @MPNEurope It's worth paying attention to the difference between 'patients' and 'patient organisations/ patient advocates', there's info in the text and this is what we use in @MPNEurope:…
Jul 18, 2022 27 tweets 5 min read
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-
Jul 11, 2022 63 tweets 12 min read
An advocacy colleague of mine just complained about having had to sit through a talk short of an hour on how to talk patients into participating in clinical trials *without* a single reference to what clinical trials have to deliver for patients, so here some explaining 🧵 relevant for any patient considering participating in a clinical trial and equally, any patient advocate asked to provide 'a patient perspective' on clinical trials
May 26, 2022 48 tweets 8 min read
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
Oct 1, 2021 11 tweets 2 min read
This 👇. Might look like *lost in technical detail* but this is precisely the level of detail that matters when you are in cancer, whatever the reason. From a patient perspective and with the risk of upsetting the maximum number of non-patient people- but don't worry, we do this all for PATIENT BENEFIT DONT WE ♥️♥️♥️♥️ 😇😇😇😇😈😈😈😈
Oct 1, 2021 72 tweets 12 min read
It's Friday evening. And today is the day where I've been patient-involved one too many times. So all of you patient-at-the-heart-of-all-we-dos, this is for you 🧵 I got into patient advocacy because #Melanoma killed my husband in a horrific way. And the healthcare system overall, in particular the clinical trials that were his only option, only added to the insult.
Apr 18, 2021 46 tweets 8 min read
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.