From Medical Research to Successful Treatment

David Fajgenbaum, an assistant professor of medicine at the University of Pennsylvania and executive director of the Castleman Disease Collaborative Network (CDCN), gave a moving keynote address that reminded the audience of the ultimate purpose and value of information work. Castleman disease is a rare “orphan” disease that strikes more than 6,000 people a year in the U.S. (more than ALS aka Lou Gehrig’s disease) and has a 5-year mortality rate, which is higher than that for several frequently diagnosed forms of cancer. Fajgenbaum is not only a Castleman disease researcher, he is also a patient. He traced his experience from the onset of the disease during his third year of medical school through three severe episodes in 3 years—during one, he was so ill that last rites were administered—to his current 3-year remission. His founding of the CDCN unified a formerly disjointed research community. It reimagined the medical research process, bringing together committed physicians and researchers, as well as patients and relatives, to share knowledge, collaborate on developing research priorities, raise funds, and enlist leading experts to tackle the top priorities. It replaced the traditional funding process of “send out a request for proposals and hope the right researchers apply” and “write and publish articles and hope someone reads them” with a collaborative, crowdsourced model involving worldwide participants. It has led to a promising new treatment that Fajgenbaum associates with his own remission. In closing, he invited the audience to “find your own Castleman disease”—a challenge to tackle issues with commitment and collaboration.

The Miles Conrad Memorial Lecture

The second day of the event was headlined by the NFAIS conference centerpiece, the Miles Conrad Memorial Lecture. This year’s awardee was Judith Russell, dean of libraries at the University of Florida. Russell, who has the rare distinction of having served in leadership positions in the corporate sector, government (as superintendent of documents at what was then called the U.S. Government Printing Office) and now higher education, titled her lecture “Celebrating Serendipity and Collaboration: Looking Back to Look Forward.” In it, she traced the importance of openness and the unexpected to new opportunities in her own career and in the dramatic yet unpredictable changes in IT that she has witnessed (and helped to bring about). In the question-and-answer period following her lecture, she reiterated those themes. Asked to predict the future direction of IT, she demurred, instead emphasizing the importance of being open, curious, and willing to explore the use of new technologies—working across boundaries toward the goal of solving the important challenges we all face. (Watch for the upcoming NewsBreaks interview with Russell for more about her insights and experiences.)

The Startup Shootout Winner

Also of note on Day 2 was a newer NFAIS tradition, the Startup Shootout. The format offers representatives of startup companies in the industry an opportunity to present their technologies and business models, field questions from the audience and a three-judge panel, and compete for the title of Startup Shootout Winner of the Year. This year’s four contestants were MyScienceWork, represented by COO Laurence Bianchini; Yewno, represented by co-founder and chief strategy and business development officer Ruth Pickering; Code Ocean, with CEO Simon Adar presenting; and protocols.io, with CEO Lenny Teytelman. At the end of the day, the judges announced MyScienceWork as this year’s winner. It provides a turnkey institutional repository solution under the product name Polaris, text- and data-mining services labeled Sirius, and the MyScienceWork scholarly archive, where individual researchers can upload their articles regardless of affiliation and anyone can search. MyScienceWork currently contains more than 800,000 OA articles, with links to subscription-only content as well.

Authentication to Combat Piracy

Throughout the conference, additional presentations and discussions covered a wide variety of pivotal issues for scholarly publishing and research libraries. In his third-day plenary presentation, Kendall Bartsch of Third Iron drew on the experience of the music industry in outlining a proposal for improving the accessibility of scholarly database content for authorized users. Bartsch believes that with the coordinated application of the authentication technology available today, scholarly publishers can reduce barriers for authorized users and thereby reduce the incidence of unauthorized access, or piracy, from an “existential” problem to a manageable one—as the music industry has already done.

A Subtheme of Openness

A subtheme of several presentations might be labeled “pivot to open.” The theme of openness came up in relation to OA and the “new big deal,” whereby article processing charges (APCs) are bundled with subscription and/or license charges and prepaid by institutional libraries. It was also reflected in presentations about expanding the openness and accessibility of research results, experimental protocols, computer code, and even, within limits, lab notebooks. Particularly intriguing was the presentation by Christopher Wilmer of the University of Pittsburgh on blockchain technology (the technology behind bitcoins) and its potential use in authenticating research publications. Wilmer is co-managing editor of Ledger, the first peer-reviewed journal devoted to research on blockchains. The “pivot to open” theme culminated with the closing keynote by Julien Jomier of Kitware, in which he defined open science as the intersection of OA, open data, and open source.

Strategic Planning at NFAIS

Another theme running through the conference was NFAIS’ own pivot, to emphasizing collaboration and interactivity. According to NFAIS president Christopher Burghardt, “Members value NFAIS most highly for conference and programming. They see it as a great forum for networking with knowledgeable peers.” In keeping with this view, audience engagement was ubiquitous. Smartphone polling before and after each session gauged audience sentiment, and breakout small group discussions on Feb. 26 addressed key industry issues. Several focus group sessions gave invited participants the opportunity to weigh in on future directions for the organization as a prelude to a new strategic planning effort. As Burghardt commented, “NFAIS is looking toward the development of a new strategic plan, which we hope to share later this year.” All in all, the NFAIS 2017 Annual Conference provided attendees with interesting, exciting, and even inspiring insights into the big pivots underway in all sectors of the information industry and professions.

Photo of Russell and Burghardt is courtesy of NFAIS.