Open access and public engagement: I need your help

Dear Reader,

I would appreciate your help.

I am working on a chapter for a book on openness within science (to be published by Manchester University Press). The book is part of the ‘Making Science Public’ program run by Prof Brigitte Nerlich at Nottingham University and aims to take a critical look at the dilemmas of open science. In my chapter I want to explore how open access publishing has impacted the relationship between the public (in its various forms and groupings) and researchers.

As someone who has supported open access from within the life sciences, I have often expressed the hope that increasing the volume of the research literature accessible to the public might stimulate a public-side demand for more information from researchers, or clearer reports (e.g. lay summaries) – or might in other ways change the dynamic of interaction with the ‘experts’. I’m interested in the question of whether open access has empowered members of the public (broadly defined) in any significant way.

This is likely to be a minority interest among the general public but I imagine that there are special interest groups – patient organisations and campaign groups among them – that have a strong interest in the research literature.

I would very much like to find specific examples. I have made a number of directed enquiries but then thought I would use my blog to widen the net, particularly since the deadline is – what’s the word? – impending.

So, does anyone out there know of cases where open access to the research literature has stimulated contact with the research community? I would be particularly interested in instances where the contact has altered the course of research or clinical practice or public policy.

I would be grateful for all comments and suggestions. Please feel free to comment below or email me via the link on the left hand side of my university web page.

Many thanks,

Stephen

 

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10 Responses to Open access and public engagement: I need your help

  1. Jason Thomas says:

    Hi,

    I’m a journalist at SBS News in Australia.
    I pay taxes, and consider myself a public servant, so therefore a member of the public.
    I use data to make stories but those datasets are often not open.

    I’m also making an app that would be easier to make if data was open.
    Send me an email and I’ll reply.

    BTW, your email link is a html link.

    • Stephen says:

      Thanks Jason – the email link is to my professional web-page (to reassure people that my request is serious) and has a link to my email address in the column on the left-hand side. I can make that clearer.

  2. Amy says:

    Stephen, I’m also guessing that this happens most often with health-related research. There was a story by Seth Mnookin a few years ago in the NYer about identification of a rare genetic disorder (I think the gene was called NGLY-1) and then therapy-seeking and eventually research-promoting through contact with paper authors, iirc. Last year I handed a random facebook person links to papers by a children’s obesity specialist in Cincinnati; the facebook person’s 8-year-old daughter had hypothalamic obesity after craniopharyngioma surgery, and he was desperate enough to be trying to raise money for a very sketchy-sounding surgery for her. He wound up contacting the clinic and getting enough support to bring the girl there, where she’s now a patient.

    There was a good deal of paper-reading going on amongst breast-feeding mothers in the early 2000s, too — you’d always find a biochemist or epidemiologist mom somewhere in the swim, and she’d do a lot of explaining — and these days I expect there’d be people who’d simply email the authors and ask questions.

    I might also say that the large and busy world of “science content writers”, who write school textbooks, standardised tests, etc., would likely greatly appreciate more OA papers. Only so far you can go with your out-of-date textbook. One of the most valuable things for me about returning to school while freelancing was journal access. In fact if you added up the value of the journal access, childcare subsidy, heavily-subsidized health insurance, gym membership, and business tax deduction, school more than paid for itself in those years.

  3. OA says:

    Does the story of Jack Andraka fit your purpose?

    http://www.righttoresearch.org/blog/open-access-empowers-16-year-old-to-create-breakth.shtml

    “Jack Andraka is a perfect example of the power of Open Access, the free availability of all academic research articles online with full reuse rights. Only 16 years old, Jack discovered a breakthrough pancreatic cancer diagnostic using carbon nanotubes. Jack’s test costs $0.03 and takes 5 minutes to run with nearly 100% accuracy so far, making it 26,667 times cheaper, 168 times faster, and 400 times more sensitive than the current test commonly used for pancreatic cancer. ”

    http://www.bradaronson.com/jack-andraka/

    “Jack Andraka used what he found through Google searches and free online science journals to develop a plan and a budget. Jack contacted about 200 people including researches at Johns Hopkins University and the National Institutes of Health with a proposal to work in their labs. He got 199 rejections before he finally got an acceptance from Dr. Anirban Maitra, Professor of Pathology, Oncology and Chemical and Biomolecular Engineering at Johns Hopkins School of Medicine. Jack worked after school every day, on weekends and over holidays at Maitra’s lab until he developed his test.”

    • Stephen says:

      That’s a good example and one that has often been touted by OA advocates. The news report is a few years old now so I wonder has there been progress in commercialising his test?

  4. Amy says:

    I just had a look around — if you read Seth’s story and search on the child’s name, you’ll get to the parents’ blog, which is current. I expect they’d be happy to talk to you about the effect of paper availability in their quest to get the problem diagnosed, find others with children with the same rare disease, form an advocacy group, and engage the reseach community.

    • Stephen says:

      Thanks Amy – Mnookin’s article is a fascinating read.

      Intriguingly, from another response to my call for information I came across mark2cure.org, which appears to be a new citizen science project inspired by the NGLY-1 case to text mine the biomedical literature looking for clues that might help with research into the disease:

      “The ability to read remains a uniquely human skill. Mark2Cure allows anyone that can read English, regardless of background, to help in the process of biomedical discovery. You can help them by identifying key pieces of information in scientific text to discover cures faster.

  5. Salem says:

    Hi, Stephen, I’ve come across your blog as someone who is researching from the outside of the academic scientific communities. An ally of mine, who is principal in open source code brain interface development, asked if I could point him to some technical research papers on my interests, and I’m not able to. Either they don’t exist or I’m not able to find them or I need to pay for them, etc. This ally and I both hail from New York City and live within the DIY atmosphere of Brooklyn and the changing world of maker electronics. Specifically, just about anybody with some technology and an inquisitive mind can advance science. By the way, my specific interest is in crystallography and its relation to latent geometries in human vision, namely in hypnagogia. If you know of anyone working on that, I’d be interested to know what they are up to.