UAlberta, Harvard libraries team up to bring hidden medical data to light
Joint project will improve access to research data on child and maternal health.
By BEV BETKOWSKI
(Edmonton) University of Alberta Libraries is teaming with a Harvard University library to improve access to scientific data from the past and present that can be used to help build knowledge about child and maternal health.
UAL and the Harvard-based Countway Medical Library have received a joint grant of US$367,600 from the Council on Library and Information Resources (CLIR), earmarked for cataloguing hidden special collections and archives.
Together, library staff from both universities are describing 39 studies comprising 390 electronic files and 135 cubic feet of paper data related to maternal, infant and child research—giving health researchers easier and wider access to a more extensive collection of existing materials and findings.
The joint 18-month project—the first in which UAL has partnered with Harvard University—represents a new, more comprehensive approach to long-term preservation of research data generated by universities. It speaks to an overarching need in the digital age to develop a framework for research data management, an issue that is being looked at across Canada, said Geoff Harder, associate university librarian.
“This project leads to better science, scholarship and research,” he said. “The time is now to figure out how to set up proper processes to deal with research data and access issues.”
The initiative builds on the post-doctoral research of Kendall Roark, a scholar at the U of A and a co-investigator on the project, along with UAL metadata librarian Sharon Farnel. Sponsored jointly by UAL and CLIR, Roark’s work focuses on investigating data sharing practices, norms and policies in health science. Through CLIR, UAL connected with Harvard, an institution experienced in processing sensitive research data.
“The Countway Medical Library had similar collections focusing on maternal and child health, and was happy to work with UAL to bridge the historical and contemporary divide between the paper and digital collections,” Roark said.
“As well, UAL looks at long-term value of collections—an interest shared by Harvard—and they saw value in our expertise in digitization initiatives,” Harder said.
Making data discoverable
So-called “hidden” historical and contemporary data—that which hasn’t been catalogued to provide easy access for users—is being drawn from Harvard’s medical library and from the Maternal Infant Child and Youth Research Network (MICYRN), a non-profit society that links 19 academic health centres and more than 20 affiliated research networks in Canada.
For its part, UAL is focused on 36 studies drawn from pediatric clinical trials and maternal and infant cohort research conducted through MICYRN. Harvard is processing research data dating from 1930 to 1987, gleaned from its health-related faculties.
The information to be catalogued includes not only published study findings, but also supporting material that can be of value to medical researchers, social scientists and historians, said Roark.
A rich variety of data will be catalogued, described and made available in whole or in part to the research community. The information available will include tables and graphs, patient surveys and other research records such as consent forms—all of which can supplement current studies and give historical context to medical and scientific research, Roark said.
“This represents a different level of discovery for researchers.”
Making existing research data discoverable helps scientists in several ways, said Lawrence Richer, an associate professor of pediatrics at the U of A and chair of MICYRN’s data management committee.
“We want to expose this information to ensure that research efforts can be somewhat co-ordinated, reduce research duplication and make the best use of what is otherwise a very expensive research enterprise, as well as patients’ time, money, effort and sometimes pain,” Richer said. “Making the data publicly discoverable is the ethical thing to do.
“When researchers are planning their next study, they can plan it around data that exists and can add to that body of knowledge,” he noted.
Among the child health issues MICRYN is researching are determining safe dosages and efficacy of medications, and exploring rare disorders.
MICYRN was already moving towards creating a data inventory and repository before joining with UAL on the project. “It was a logical next step to expand on our vision of being co-ordinated in the maternal and child health research community,” Richer said. “So when a patient asks who else is doing this research, I can answer that more readily.”
The UAL project is also looking at what the boundaries are for thoughtful, deliberate reuse and management of sensitive research, data and records, all the while preserving the privacy of research participants. “We hope to answer questions about how to evaluate these materials,” Roark said. ‘We want to understand what the current limits and possibilities are in terms of ethics and privacy in data sharing and preservation.”