A systematic review of barriers to data sharing in public health

Panhuis, Willem G. van; Paul, Proma; Emerson, Claudia; Grefenstette, John J.; Wilder, Richard; Herbst, Abraham J; Heymann, David L.; Burke, Donald S.

doi:10.1186/1471-2458-14-1144

Cited by 419 publications

(381 citation statements)

References 53 publications

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“…6 In situations where institutional subscriptions are not feasible, open access provides another paradigm to facilitate evidencedinformed decision-making. 7,8 The case for open access is perhaps best understood in the context of health care. In the era of evidence-based medicine, 9 the public has an underlying assumption that physicians and frontline health-care workers are updated with high-quality health information so as to provide the best care possible.…”

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confidence: 99%

Open access in South Africa: A coherent strategy is needed (with corrigendum)

Hartman¹,

Wu²

2018

S. Afr. J. Sci.

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If you asked an idealist to describe the scientific endeavour, the phrase 'seeking the objective truth' might come to mind. But how is this truth obtained? The sharing and translating of knowledge is perhaps the key ingredient, along with a dash of persistence and luck. As budding researchers, this notion excites us -the thought that our ideas can cut across the globe, serving a greater purpose of helping others along their path of truth seeking.One of us (MH) left Canada after graduating to work with the South African Department of Planning, Monitoring and Evaluation. The work involved a literature review and replying to requests for evidence summaries that flowed into the department. However, there was immediately a barrier to overcome that we have never encountered within our bubble of Canadian academia. This barrier -both a literal and virtual wall -most often presented itself as a paywall; colleagues in the department simply could not access a significant amount of published scientific research without having to pay exorbitant fees for access.Hailing from Canada means our home university affords us the privilege of institutional access to more publications and data than we would ever use. Encountering paywalls for the first time, brought up the question of how it was possible to function in a research unit without this ability to tap into the shared scientific body of knowledge. How can research units, let alone a branch of the South African government, be expected to deliver quality, evidenceinformed deliverables in a timely and feasible manner if the very evidence it relies on is inaccessible? The more we questioned, the clearer it was to us that this was not an isolated challenge.A recent survey of the capacity for evidence synthesis in Africa amongst 176 researchers, government officials and NGO workers indicated that a lack of access to research literature and data was one of the greatest hindrances to their work -second only to lack of funding. 3 This research climate may contribute to the fact that in the South African government, the use of research outputs as a main source of evidence is tepid, at best. In a recent survey, only 6 of 54 senior officials in the government indicated that they rely on research, while the majority (38) responded that they rely on their networks.4 While inability to access publications was not included in this survey, it would be reasonable to hypothesise the role it plays.5 Although tacit knowledge from strong networks can be useful, research data and publications remain imperative for evidence-informed decision-making. 6 In situations where institutional subscriptions are not feasible, open access provides another paradigm to facilitate evidencedinformed decision-making. 7,8 The case for open access is perhaps best understood in the context of health care. In the era of evidence-based medicine, 9 the public has an underlying assumption that physicians and frontline health-care workers are updated with high-quality health information so as to provide the best care possi...

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confidence: 99%

Open access in South Africa: A coherent strategy is needed (with corrigendum)

Hartman¹,

Wu²

2018

S. Afr. J. Sci.

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“…While open access to data accelerates science, ownership of intellectual property and the benefits derivable from that may be barriers to sharing. African researchers are aware of the financial rewards and recognitions that have accrued to researchers in other parts of the world from the outcome of their research and are concerned about not receiving similar benefits from their research or credit for sharing their hard-won data (van Panhuis et al 2014). African researchers are particularly concerned about being perceived and treated as mere data collectors who do not make sufficient intellectual contributions worthy of similar levels of recognition and benefits received by other members of the research consortia.…”

Section: Sharing Of Genomic Datamentioning

confidence: 99%

Genomic Research Data Generation, Analysis and Sharing – Challenges in the African Setting

Mulder

Adebamowo

et al. 2017

Data Science Journal

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“…With increasing evidence showing that PLWH who are virally suppressed are unlikely to transmit HIV to others [5], it has become even more important for prevention efforts to be aimed towards ensuring that PLWH are retained in HIV care and achieving durable viral suppression [6]. Data-to-care efforts are a mechanism for meeting such national and local goals.…”

Section: Main Text Introductionmentioning

confidence: 99%

Impact of Cross-Jurisdictional Data Exchange on the Estimating of HIV Population Living in the District of Columbia (Preprint)

Hamp¹,

Doshi²,

Lum³

et al. 2018

Preprint

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BACKGROUND Accurate HIV surveillance data is essential to monitoring the trends to end the HIV epidemic. Due to strict policies around data security and confidentiality, HIV surveillance data has not been routinely shared across jurisdictions, with the exception of a biannual case-by-case review process to identify and remove duplicate cases (Routine Interstate Duplicate Review, RIDR). HIV surveillance estimates for the District of Columbia (DC) are complicated by migration and care-seeking throughout the metropolitan area, which includes Maryland (MD) and Virginia (VA). To address gaps in HIV surveillance data, the health departments of DC, MD and VA established HIV surveillance data sharing agreements. While the Black Box (a privacy data integration tool external to the health departments) facilitated the secure exchange of data between DC, MD and VA, its previous iterations were limited by frequency and scope of information exchanged. The health departments of DC, MD and VA engaged in data sharing to further improve HIV surveillance estimates. OBJECTIVE The objectives of this evaluation were to assess the impact of cross-jurisdictional data-sharing on the estimation of persons living with HIV (PLWH) in DC and the reduction of cases in the RIDR process. METHODS The data sharing agreements established in 2014 allowed for the exchange of HIV case information (e.g. current residential address) and laboratory information (e.g. test types, result dates and results) from the enhanced HIV/AIDS Reporting System (eHARS). Regular data exchanges began in 2017. The participating jurisdictions transferred data (via secure file transfer protocol) for individuals having a residential address in a partnering jurisdiction at the time of HIV diagnosis and/or evidence of receiving HIV-related services at a facility located in a partnering jurisdiction. DC DOH compared the data received to the DC eHARS and imported updated data that matched to existing cases. Evaluation of changes in current residential address and HIV prevalence were conducted by comparing data before and after the HIV surveillance data exchanges. RESULTS After the HIV surveillance data exchange, an average of 390 fewer cases were estimated to be living in DC for each year from 2012 to 2016. Among cases with a residential status change, 66.4% of cases had relocated to MD and 19.8% had relocated to VA; the majority of these cases had relocated to counties bordering DC. Relocation in and out of DC differed by mode of transmission, race/ethnicity, age group and gender. After the data exchange, the volume of HIV cases needing RIDR decreased by 74% for DC-MD and 81% for DC-VA. CONCLUSIONS The HIV surveillance data exchange between the public health departments of DC, MD and VA reduced the number of cases misclassified as DC residents and reduced the number of cases needing RIDR. Continued data exchanges will enhance the ability of the DC DOH to monitor the local HIV epidemic.

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A systematic review of barriers to data sharing in public health

Cited by 419 publications

References 53 publications

Open access in South Africa: A coherent strategy is needed (with corrigendum)

Open access in South Africa: A coherent strategy is needed (with corrigendum)

Genomic Research Data Generation, Analysis and Sharing – Challenges in the African Setting

Impact of Cross-Jurisdictional Data Exchange on the Estimating of HIV Population Living in the District of Columbia (Preprint)

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