Today is not that day 

Struggles in #openscience advocacy

6th of May 2020

In recent years, scientists have contributed to a publishing system they are not entirely happy with. I am talking about a publishing system that limits access to scientific knowledge for the less privileged, such as patients, SMEs, ex-scientists, etc.

There are many reasons for this to have happened, such as the tyranny of the impact factor and the false belief that publishing in open access is by definition too expensive.


I know I should look at all the people out there who are already making #openaccess and #openscience happen. And most of the time I do.

But today is not that day.

  • Today I’m sad about the disempowering paywalls I still encounter every day;
  • Today I’m sad about the authors who say they want ’the system’ to change but keep on contributing to the ‘loss of function’ of scientific knowledge themselves;
  • Today I’m sad that some authors don’t see how the values underpinning science (equity, openness, honesty, not for profit, transparency, accountability, reproducibility, etc.) – which help advance the research enterprise – are completely lost upon a phase transformation from free, soluble, knowledge to rigid (amyloid) publishing sheets;
  • Today I’m sad that my efforts to show the potential of #openscience aren’t seen in the way they are meant perse. They aren’t only meant as an artistic illustration of people’s work; they are foremost meant as an illustration of how patients could help science and healthcare achieve their potential (deBronkart, 2019).

From the book ‘Open Access’ by Peter Suber (2012)

I am very grateful that my fellow patient advocates Ben en Hugh (thanks, guys!) do see it. It probably takes a patient perspective to feel the risks of being left out when you feel you have so much to contribute to developments concerning your own disease.

But even their support cannot make my sadness go away today (Sorry guys, not your fault. It just isn’t that day).


Over the past year, I’ve been trying to convince researchers to retrospectively publish their articles (for free!) as green open access in the university repository (or a general repository such as Zenodo). I thought that:

  • If they’d knew this option exists …
  • If only I would tell them they could republish their closed access papers in open access, without extra cost for them ..

they would all come running and do ’the right thing’. Some did, but for others, the timing of my question never seems right. Priorities lie elsewhere.

So today I’m not only sad. I’m also afraid.

  • What I’m really afraid of is that some scientists don’t truly see the value of letting patients in on their work. Just as men once didn’t see the value of women taking a vote;
  • What I’m really afraid of is that people are not willing to consider how they have a role in shaping the things they say they don’t want;
  • What I’m really afraid of is that it’s not in ‘not knowing’ how to change the system, but in ‘not caring’ enough;
  • What I’m really afraid of is that I’m as naive as I’ve been told over and over again in all my efforts to make the world – my world – a bit better.

Don’t worry. I know myself. I will get back on my feet, no matter what people tell me.

But today …

just isn’t that day.


(With a photo of my son’s ear)

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