Opening Science for Patients

Ben Stecher thinks researchers have a moral obligation to share data


  • newswise-fullscreen Opening Science for Patients

    Credit: The Neuro

    Ben Stecher has become a patient advocate in a field where the complexity of the science often shuts out anyone who doesn’t have a PhD.

Newswise — Since being diagnosed with Parkinson’s disease (PD) six years ago at the age of 29, Ben Stecher has learned a lot about not just PD, but medical science in general. One thing in particular he’s learned is just how long it can take to develop effective therapies. In the case of PD, there hasn’t been a major breakthrough since L-DOPA was discovered in the 1960s.

Stecher has become a patient advocate in a field where the complexity of the science often shuts out anyone who doesn’t have a PhD. He travels the globe, meeting lead researchers, visiting labs and giving presentations on what it’s like waiting for new therapies that never seem to materialize.

One thing he finds particularly frustrating is overspecialization and insular thinking. Neuroscience is a complex field and researchers must have an in-depth understanding of specialized topics, but collaboration amongst different specialists can lead to important discoveries.

“What happens often is that they become entrenched in a certain way of thinking because of that expertise. While it's a great thing and while it helps them take that expertise to its fullest extent, it also kind of creates blinders, like saying ‘this is what we're good at, so let’s do this,’” he says.

“We need to start integrating various fields together and start integrating all the knowledge that we built up over time so we can have more comprehensive picture of the disease and the research landscape.”

Stecher blames insular thinking in research on a combination of factors. It’s a competitive field and sometimes professional priorities get in the way. There are many incentives to guarding data and hoarding as much credit as possible.

“Collaboration requires not only people putting aside their personal interest but their own personalities and their own egos to some extent to try to work towards the greater good. It’s almost antagonistic to human nature to some degree. I mean we’re very much self-interested creatures, and we've gotten to where we are because of our desire to kind of promote our own selfish needs and there's nothing inherently wrong with that. But if we really want to develop as a society, it's going to require going to that next stage, which is really each person working towards the interest of the greater good.”

Institutes can incentivize data sharing and collaboration, Stecher says. He points to The Neuro’s open science initiative as an example of a step in the right direction.

“I'm grateful The Neuro has taken it upon itself to step in and make this a priority,” he says. “Open science for me comes down to putting the interests of society, and in this case patients, above the interests of individual careers. I mean a lot of science gets done for either self-interested reasons or also just to accelerate the development of new knowledge, and while the mandate of science is to progress our understanding of nature and who we are, there are also more pressing issues and better ways to integrate all of the information that's being produced.”

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