The analysis, published in the journal BMC Public Health and funded by the Bill & Melinda Gates Foundation and the National Institutes of Health (NIH), classifies and examines the barriers in order to open a focused international dialogue on solutions.
“Data on disease surveillance, intervention coverage, vital statistics and mortality represent some of the most widely collected but also some of the most underused data,” said lead author Willem G. van Panhuis, M.D., Ph.D., assistant professor of epidemiology at Pitt Public Health. “Innovative methods for collection of new data are developed all the time, but a framework to share all these data for the global good is seriously lacking. Investments in routine data systems will better position health officials to address ongoing challenges as well as new public health threats, such as the current Ebola epidemic in West Africa.”
Dr. van Panhuis and his team – which included experts in ethics and law, as well as public health and epidemiology – identified more than 1,400 scientific publications related to public health data-sharing, ultimately winnowing them down to the 65 most relevant articles. From those, they determined 20 real or perceived barriers to data-sharing in public health and classified them into six categories: technical, motivational, economic, political, legal and ethical.
“These barriers and categories describe a landscape of challenges that must be addressed comprehensively, not piecemeal,” said senior author Donald S. Burke, M.D., Pitt Public Health dean and UPMC-Jonas Salk Chair of Global Health. “We must work together as a global community to develop solutions and reap the benefits of data-sharing, which include saving lives through more efficient and effective public health programs.”
The team found that most technical, motivational and economic barriers are deeply embedded in much larger challenges of health information system capacity, particularly in low- and middle-income countries. Solutions lie in sufficiently funding such systems through international cooperation and shared development of data and infrastructure used across agencies and institutes.
The political, legal and ethical barriers will require a dialogue across international agencies that should include the World Health Organization, World Intellectual Property Organization and World Trade Organization, as well as the countries, development and funding agencies, and experts in ethics and law. The team proposes the creation of a treaty for data-sharing in public health across the world, as well as a commission to monitor, mediate and facilitate data-sharing.
“Identifying and classifying these barriers was the first step toward harnessing the potential of data for a new era in population health,” said Dr. van Panhuis. “As our knowledge of these barriers increases, so will the opportunities for solutions.”
Additional researchers on this project are Proma Paul, M.H.S., and John Grefenstette, Ph.D., both of Pitt Public Health; Claudia Emerson, Ph.D., of the University of Toronto; Richard Wilder, J.D., of the Bill & Melinda Gates Foundation; Abraham J. Herbst, M.B.Ch.B., M.Sc., F.F.C.H.(S.A.), of both the INDEPTH Network in Ghana and the University of KwaZulu-Natal in South Africa; and David Heymann, M.D., of the Chatham House London.
This research was funded by the Bill & Melinda Gates Foundation Vaccine Modeling Initiative grant no. 49276 and the NIH’s National Institute of General Medical Sciences grant no. 5U54GM088491.
University of Pittsburgh Schools of the Health Sciences