Dataset Information

Measuring Global Disease with Wikipedia: Success, Failure, and a Research Agenda.

ABSTRACT: Effective disease monitoring provides a foundation for effective public health systems. This has historically been accomplished with patient contact and bureaucratic aggregation, which tends to be slow and expensive. Recent internet-based approaches promise to be real-time and cheap, with few parameters. However, the question of when and how these approaches work remains open. We addressed this question using Wikipedia access logs and category links. Our experiments, replicable and extensible using our open source code and data, test the effect of semantic article filtering, amount of training data, forecast horizon, and model staleness by comparing across 6 diseases and 4 countries using thousands of individual models. We found that our minimal-configuration, language-agnostic article selection process based on semantic relatedness is effective for improving predictions, and that our approach is relatively insensitive to the amount and age of training data. We also found, in contrast to prior work, very little forecasting value, and we argue that this is consistent with theoretical considerations about the nature of forecasting. These mixed results lead us to propose that the currently observational field of internet-based disease surveillance must pivot to include theoretical models of information flow as well as controlled experiments based on simulations of disease.

SUBMITTER: Priedhorsky R

PROVIDER: S-EPMC5542563 | biostudies-literature | 2017 Feb-Mar

REPOSITORIES: biostudies-literature

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Measuring Global Disease with Wikipedia: Success, Failure, and a Research Agenda.

Priedhorsky Reid R Osthus Dave D Daughton Ashlynn R AR Moran Kelly R KR Generous Nicholas N Fairchild Geoffrey G Deshpande Alina A Del Valle Sara Y SY

CSCW : proceedings of the Conference on Computer-Supported Cooperative Work. Conference on Computer-Supported Cooperative Work 20170201

Effective disease monitoring provides a foundation for effective public health systems. This has historically been accomplished with patient contact and bureaucratic aggregation, which tends to be slow and expensive. Recent internet-based approaches promise to be real-time and cheap, with few parameters. However, the question of <i>when and how</i> these approaches work remains open. We addressed this question using Wikipedia access logs and category links. Our experiments, replicable and extens ...[more]

PMID: 28782059

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Project description:BackgroundResearch priorities are best defined through engagement with communities who will be impacted by the research and have lived experience of the topics to be studied. We aimed to establish a pediatric rare disease community stakeholder group and empower them in (1) eliciting perspectives from affected families in the wider region and (2) synthesizing collective ideas into a research agenda focused on shared ethical, legal, and social implications (ELSI) across rare disease.MethodsThis two-year project utilized a community-centered approach to engage rare disease community members as equal partners in developing a research agenda for ELSI in rare disease. We established "Rare Voices" (RV), a 22-member stakeholder group of patients, parents, clinicians and researchers. Following capacity-building trainings, RV designed and conducted listening sessions with teen patients and parents of children with rare diseases to explore challenges, positive experiences, and ethical concerns. Listening session findings were synthesized and contextualized into research topics, which RV members further refined and prioritized. We used established measures to assess RV member engagement and satisfaction.ResultsFrom 14 listening sessions with parents (n = 52) and teen patients (n = 13), RV identified eight core research topics as most important for future rare disease research: coordinating care, communication, accessing resources and care, impact on family unit, community and support in society, mental health and identity, ethical aspects of care, and uncertainty. RV members were highly engaged throughout the two-year project and reported high levels of satisfaction with the experience and research agenda.ConclusionsThrough capacity-building and authentic engagement, this project resulted in a community-led rare disease research agenda to guide future rare disease ELSI research that aligns with patients' and families' priorities. An environment of equal partnership and respect created a space for mutual learning where community members were empowered to shape the research agenda based on their collective experiences. The agenda recognizes the shared psychosocial and healthcare experiences of rare disease and offers practical areas of research to address patient and family needs.

Project description:BackgroundGlobally, there is renewed interest in and momentum for strengthening community health systems, as also emphasized by the recent Astana Declaration. Recent reviews have identified factors critical to successful community health worker (CHW) programs but pointed to significant evidence gaps. This review aims to propose a global research agenda to strengthen CHW programs.Methods and resultsWe conducted a search for extant systematic reviews on any intermediate factors affecting the effectiveness of CHW programs in February 2018. A total of 30 articles published after year 2000 were included. Data on research gaps were abstracted and summarized under headings based on predominant themes identified in the literature. Following this data gathering phase, two technical advisory groups comprised of experts in the field of community health-including policymakers, implementors, researchers, advocates and donors-were convened to discuss, validate, and prioritize the research gaps identified. Research gap areas that were identified in the literature and validated through expert consultation include selection and training of CHWs, community embeddedness, institutionalization of CHW programs (referrals, supervision, and supply chain), CHW needs including incentives and remuneration, governance and sustainability of CHW programs, performance and quality of care, and cost-effectiveness of CHW programs. Priority research questions included queries on effective policy, financing, governance, supervision and monitoring systems for CHWs and community health systems, implementation questions around the role of digital technologies, CHW preferences, and drivers of CHW motivation and retention over time.ConclusionsAs international interest and investment in CHW programs and community health systems continue to grow, it becomes critical not only to analyze the evidence that exists, but also to clearly define research questions and collect additional evidence to ensure that CHW programs are effective, efficient, equity promoting, and evidence based. Generally, the literature places a strong emphasis on the need for higher quality, more robust research.

Dataset Information

Measuring Global Disease with Wikipedia: Success, Failure, and a Research Agenda.

Publications

Measuring Global Disease with Wikipedia: Success, Failure, and a Research Agenda.

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