“Open Access” for the Activist Community

Nev Jones, PhD
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As many MiA readers are aware, a substantial percentage of mental health-related research reports — hundreds of thousands of articles, including many of direct relevance to community-based activists, advocates and clinicians — are currently held behind paywalls (accessible only through expensive individual or university-based subscriptions).   Until recently, this was true even for publicly-funded research, in both the UK and US.  While there are now a growing number of initiatives intended to promote (free) “open access”  (see a list of open access projects here), many important publications remain inaccessible.  I and many other activist and scholars believe open access is a significant social justice issue.

Given current legal barriers, myself and a number of researchers and students affiliated with Users & Survivors in Academia and/or the Lived Experience Research Network have put together a shareable Dropbox folder with thematically grouped research articles, measures and evaluation resources.  Most recently, Anne Weaver of the National Empowerment Center has added very helpful additional resources on assisted outpatient treatment (AOT) in an effort to support public critiques of the Murphy Bill.

Activists and allies are welcome to join the folder and/or suggest additional topics or themes.  If interested, please fill out the form here or contact me directly (nevjonesphd[at]gmail[dot]com).

6 COMMENTS

  1. Thanks Nev. This is very useful.

    I’ve passed on the information to folks on a mental health user led research group I’m part of in Scotland. We are involved in planning qualitative research into crisis response services, to find out what is happening in our country by listening to the voices of people with lived experience. Our aim is to engage with people both intensively and far and wide, so as to gain an understanding of what’s happening while also gathering evidence to influence positive change. We will link with English colleagues working in user led research and plan to submit written pieces for publishing in journals and other online resources.

  2. Awesome project and best of luck growing the free library! Hopefully, in addition to getting greater access for people in academia, someone will take on the enormous task of getting equal ‘access’ to the people who are shut away and desperately in need of alternative sources of information to make informed medical decisions. They include people shut away at group foster homes, psychiatric facilities, jails, and they frequent health care clinics, soup kitchens, and other social service agencies in communities throughout the US. I spent hundreds and hundreds of hours in psychiatric facilities, jails, and foster homes while visiting my loved one and during that time I frequently noticed a variety of ‘educational’ resources for psychiatric patients and their loved ones, ranging from E Fuller Torry’s books, to videos explaining electroshock, the miracle ‘cure’, to flyers advertising weekly support groups hosted by NAMI. But NEVER ONCE at these institutions did I see a flyer for MindFreedom International, Hearing Voices Network, books such as ‘Anatomy of an Epidemic’ or those making the case against the biological model of mental illness, or videos such as ‘Healing Homes’ and the Soteria movement with a taped interview of the late Dr. Mosher.

    If you are a peer support specialist or a dissident psychiatrist or other health care provider, or if you belong to a real consumer/survivor group in your community, not the fake kind purchased by big Pharma, please fight for the right to equal access to post alternative materials in institutions. It could save someone’s life! My child is shut up in one of these institutions and she needs to know that this supportive community exists every day to keep hope alive.

  3. Big thumbs up for this important initiative! Have felt frustrated and angry to many years about millions of activists being kept from access to research findings locked behind multi-dollar pay walls. Sending specific articles out from behind the pay walls of academic peer reviewed journals to a wider ‘public’ is prohibited. I have been doing this to a small degree, emailing to some friends for ‘educational purposes’. Each time I felt the injustice of only reaching a ridiculously small number of ‘peer survivors’.

    The Users & Survivors in Academia and/or the Lived Experience Research Network shareable Dropbox folder is tearing down walls akin to ‘fort know scientific safe’. As they are spread about on individual websites and not systematically indexed, I suggest ‘grey literature’ reports on user/consumer research projects be included in the new drop box. Over more than a decade the latter, especially in the UK, have been pioneering to make users’/consumers’ voices radically change the evidence base of what gets systematically explored and reported about mental health issues from the mouth of lived experience.