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When worlds collide

Open science meets Parkinson’s 

19th of April 2019

Since 2011  I’ve been working (1) on catalysing open science in Dutch universities and institutions. Open science (2) is the sharing of the research process and all of its intermediate results as open, quick and digestible as possible with the aim of increasing the value of scientific research.

In this process of sharing, the involvement of patients isn’t restricted to being the object of study anymore. The envisioned role of the patient now ranges from being a partner in setting the research agenda, giving input about study design to being a patient reviewer of an academic article (3). By adding new perspectives into the research equation, innovation can take place.

When worlds collide

Little could I expect that I would encounter open science from the patient perspective. Since 2018, when I heard I have Parkinson’s disease I’ve been exploring ‘the other side of the table’ of open science:

I enrolled in a study as a participant. The study in question- cogtips – investigates a possible new treatment method for cognitive complaints in Parkinson’s.

After having a brain scan taken, I asked the Principal Investigator for some time. I asked him to publish the results in an open access journal and to make a patient-friendly version of the results available. Also, we discussed which data they keep and share and why. Furthermore, the Informed Consent form which I signed states my data may be held for 15 years. I stated that, in my opinion, this is too short : ) The data include MRI’s, so why toss them away after 15 years?

I applied for the position of patient researcher (Dutch) for the Parkinson Vereniging. Currently, I am assigned to two PhD projects:

    • Janna Maas is the PI of the perspective study which studies the efficiency of a personalized speech therapy provided in the Parkinson’s patients’ own home using video conferencing and the use of a voice trainer app;
    • Lieneke van der Heuvel studies the feasibility of using big data in personalising important decisions (such as the type of medication to take) which are made in the treatment room.

As a patient researcher, I get to ask questions about the study design and progress which helps to put to patient perspective forward. Very rewarding!

I have started this blog and with it, I hope to contribute to the digestibility and transferability of at least some scientific research.

All the great Parkinson’s research out there is mostly transformed into research articles which aren’t very accessible for patients. Making the newly acquired knowledge understandable for patients is a profession on its own. I, for one, care very much about science translators such as Science of Parkinson’s. Simon does a great job at digesting and connecting the news on Parkinson’s out there. And most of all: he shows he cares about informing patients! Even though Simon doesn’t know me in person, it does feel personal to me. In fact, I feel acknowledged in being more than a patient.

The images on Parkinson’s that I draw over here are openly licensed and therefore available for reuse.

What the other side has taught me so far

Sitting at the patient end of the table I’ve observed the following:

I am quite frustrated about the number of paywalls I encounter just trying to learn more about my disease. I feel that it is my right as a patient to be up to date on the latest research. Therefore, I have no moral problems with being a pirate and accessing the literature I need to be able to do my part in making science communicable via Sci-Hub.

A growing number of us patients are experiencing frustration at having newly minted knowledge kept from us …  | Dave deBronkart (4)

When you are surfing on top of the wave called Open Science, as I have been in the past years, it’s easy to lose sight of the barriers which exist between visions, guidelines, codes of conduct and daily practice.

For example, even though plan S offers nine options to comply (5) to making research available in open access, a hurdle to mobilise scientists accordingly does exist. Even at my own hospital, which agrees to the principles of Open Science, open access publishing in Parkinson’s research isn’t mainstream yet. The green route to open access publishing isn’t known to many of the researchers I’ve talked to.

We are in desperate need of initiatives such as the ‘You share, we take care!‘ (6) pilot of the VSNU. With this pilot, Dutch universities have decided to give open access an extra boost. On the basis of the Taverne Amendment (7), a change in Article 25fa of Dutch Copyright Law in 2015, the publishers’ versions of short scientific works will be made available after six months via the university repository. The Taverne Amendment allows researchers to share short scientific works (e.g. articles & book chapters), even as a co-author and regardless of any restrictive publishers’ guidelines.

The importance of opening up science is easily stated when it’s your job and expertise, but as a patient, you have a different role. The researchers I meet are sometimes also my care providers. And if the first answer to ‘why don’t you publish this in open access’ is a story about the Journal Impact Factor with no questions asked in return, I decide not to go on a Don QuichottOA. It’s easy to be viewed as a critic and that is not the position you want to find yourself in as a patient.

These experiences are however symbolic for the fact that patients are – in spite of the best intentions of care providers – still mainly seen as patients and not as persons who pursue careers of their own or who can make a difference in Parkinson’s because of their knowledge and talents. But that will be the topic of another post at some time.

Wrapping it all up

To wrap it all up, I can see how the ability of patients to participate contributes to open science. But if we really want to harvest all of the patients’ potential-out-there, patients should also be able to build on open science.

With my expeditions, I try to do my bit to make my open voice heard. And even though I know I have just one voice, I think sticking to the following quote is my very best option:

“No one drop, thinks it caused the flood”.

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Sparks  

Sources

(2) Tennant, J. (2019). Imagine a Research Future Defined by Open Values: Introducing the Open Science MOOC. Retrieved from https://doi.org/10.25815/6hyr-g583.

(3) Staniszewska, S., Stephens, R., Flemyng, E. (2018). Developing the infrastructure for patient review in academic journals. Research Involvement and Engagement 4:31. 
https://doi.org/10.1186/s40900-018-0114-2 

(4) deBronkart, D. (2019). Open access: remember the patients. BMJ 2019;365:l1545. https://doi.org/10.1136/bmj.l1545

(5) Kramer, B., Bosman, J. (November 30, 2018). Nine routes towards Plan S compliance. [Blogpost]. Retrieved from https://101innovations.wordpress.com/2018/11/30/nine-routes-towards-plan-s-compliance/

(6) OpenAccess.nl. (2019). You share, we care. Retrieved from https://www.openaccess.nl/en/you-share-we-take-care

(7) OpenAccess.nl. (2019). Amendment to Copyright Act. Retrieved from https://www.openaccess.nl/en/events/amendment-to-copyright-act

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