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Opening Research, Data, Minds, Hearts

Among the many things altered by the Internet is the sense of what it means to make things public. The world is simply a much more public place, in the sense of what is made visible and accessible, whether image or text, whether from your neighbour or an organization on the other side of the globe. For my part, I have been fascinated by and involved in what this means for the research and scholarship that universities produce. One element of this new public quality involves the publishing of data on new scale. The fifteenth-century emergence of the printing press added greatly to the public quality of data, as Elizabeth Eisenstein brilliantly pointed out some decades ago, increasing its reliability and accessibility, in areas such as astronomy, enabling others to compare, extend, replicate and refute it.

Now, in the digital era, that tradition continues on a whole new scale in astronomy, through such open data organizations as the Centre de Données astronomiques de Strasbourg. It has also spread from the astronomical to the micrological, in genetics, for example, with open data archives, such as Genbank, WormBase, and FlyBase. One effect of these projects being open on the web is that, after a century of increasing specialization within the disciplines, there is a far greater exchange and awareness of best practices across disciplines.

For those of us working in the social sciences this leads to the question of open data in our field. It makes no less sense. There’s the cost of always having to generate fresh data and a similar lack of reanalysis and replication, as I noted with astronomy dating back to Copernicus and company. The emerging platforms for sharing data, such as Dataverse Network, provide easy ways to mount the data online and provide citations for it, so that such contributions can be properly credited.

Yet one of the principle issues for openly sharing data in the social sciences has been that of anonymity (along with technical issues of standardizing data formats to ease reuse). The anonymity of subjects has also been an issue for genetics, but it is all that much greater when it comes to data that consists of audio and video recording as a vital element in the social science’s inquiry into how people act and make sense of the world. It might be readily assumed that open data, when it come to video records of interviews and other observations, would be a non-starter with research ethics boards.

However, that story is changing, in positive ways. What had been left out of the ethical equation was another factor, and one that also plays on this notion of open data in the digital age, along with the new sensibility of going public, by blog-post, Twitter, and Facebook. It involves people’s rights to share their views directly with the world, rather than having them kept largely invisible and when shared, made anonymous.

Something of a Canadian research breakthrough in this regard, at least in my experience, recently took place at the University of British Columbia. It was there that Dr. Mary K. Bryson, Professor in Language and Literacy Education and Director, Institute for Gender, Race, Sexuality and Social Justice, was able to obtain research ethics clearance to post video from interviews with research subjects in her national CIHR study “Cancer’s Margins and the Choreography of Knowledge: Toward a Queer Biopolitics and the Mobilization of Public Health Knowledge.”

I am a collaborator on the study and Mary explained, in an email, that the research ethics board recognized that “there are considerations beyond the anonymity protections afforded the sharing of experiential knowledge.” The research subjects in the study can appreciate the value of what they know and want to contribute their experience to what Mary terms “the pedagogic value of experiential knowledge.” This alters the researcher’s role. She continues to explores how the ill might be better served, but she also helps those with the experience of the disease to teach others about that experience, in a recognition of that expertise. These subjects should have the ethical right, as Mary sees it, “to share experiential knowledge,” given its value “for other patients and their support people.”

Among the sources that Mary has drawn inspiration from, in pursuing this open data and shared experiential knowledge approach, is the Health Experience Research Group at Oxford. This group has created the healthtalkonline.org which provides a database of 2,000 patient experiences for some fifty illnesses. Make no mistake. This is not a database of raw data files, originally gathered by the researchers. It is a carefully edited set of segments, transcribed and set within a well-structured and searchable database.

Yet as such, it represents changes in the relationship between researcher and subject around authority and expertise. It is also an opening of the conversation about the sharing of data that goes into social science research, a conversation that involves researchers, participants in research, and research ethics review boards. It is about research in which subjects contribute more than data, as they open their hearts and allowed to share with others what’s on their minds. I see it as a conversation that can lead to better research and to research that can only increase its value as a public good and service.

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