Community perspectives on the benefits and risks of technologically enhanced communicable disease surveillance systems: A report on four community juries

Background Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologies – pathogen whole genome sequencing (WGS) and Big Data analytics – promise to improve our capacity to detect and control outbreaks earlier, saving lives and resources. However, routinely using these technologies to capture more detailed and specific personal information could be perceived as intrusive and a threat to privacy. Method Four community juries were convened in two demographically different Sydney municipalities and two regional cities in New South Wales, Australia (western Sydney, Wollongong, Tamworth, eastern Sydney) to elicit the views of well-informed community members on the acceptability and legitimacy of: making pathogen WGS and linked administrative data available for public health research using this information in concert with data linkage and machine learning to enhance communicable disease surveillance systems Fifty participants of diverse backgrounds, mixed genders and ages were recruited by random-digit-dialling and topic-blinded social-media advertising. Each jury was presented with balanced factual evidence supporting different expert perspectives on the potential benefits and costs of technologically enhanced public health research and communicable disease surveillance and given the opportunity to question experts. Results Almost all jurors supported data linkage and WGS on routinely collected patient isolates for the purposes of public health research, provided standard de-identification practices were applied. However, allowing this information to be operationalised as a syndromic surveillance system was highly contentious with three juries voting in favour, and one against by narrow margins. For those in favour, support depended on several conditions related to system oversight and security being met. Those against were concerned about loss of privacy and did not trust Australian governments to run secure and effective systems. Conclusions Participants across all four events strongly supported the introduction of data linkage and pathogenomics to public health research under current research governance structures. Combining pathogen WGS with event-based data surveillance systems, however, is likely to be controversial because of a lack of public trust, even when the potential public health benefits are clear. Any suggestion of private sector involvement or commercialisation of WGS or surveillance data was unanimously rejected

Privacy and Security Concerns Associated with MHealth Technologies: A Social Media Mining Perspective

mHealth technologies seek to improve personal wellness; however, there are stillsignificant privacy and security challenges. With social networking sites serving as lens through which public sentiments and perspectives can be easily accessed, little has been done to investigate the privacy and security concerns of users, associated with mHealth technologies, through social media mining. Therefore, this study investigated various privacy and security concerns conveyed by social media users, in relation to the use of mHealth wearable technologies, using text mining and grounded theory. In addition, the study examined the general sentiments toward mHealth privacy and security related issues, while unearthing how the various issues have evolved over time. Our target social media platform for data collection was the microblogging platform Twitter, which was accessed through Brandwatch providing access to the “Twitter firehose” to extract English tweets. Triangulation was conducted on a representative sample to confirm the results of the Latent Dirichlet Allocation (LDA) Topic Modeling using manual coding through ATLAS.ti. By using the grounded theory analysis methodology, we developed the D-MIT Emergent Theoretical Model which explains that the concerns of users can be categorized as relating to data management, data invasion, or technical safety issues. This model claims that issues affecting data management of mHealth users through the misuse of their data by entities such as wearable companies and other third-party applications, negatively impact their adoption of these devices. Also, concerns of data invasion via real-time data, security breaches, and data surveillance inhibit the adoption of mHealth wearables, which is further impacted by technical safety issues. Further, when users perceived that they do not have full control over their wearables or patient applications, then their acceptance of these mHealth technologies is diminished. While a lack of data and privacy protection policies contribute negatively to users’ adoption of these devices, it also plays a pivotal role in the data management issues presented in this emergent model. Therefore, the importance of having robust legal and policy frameworks that can support mHealth users is desired. Theoretically, the results support the literature on user acceptance of mHealth wearables. These findings were compared with extant literature, and confirmations found across several studies. Further, the results show that over time, mHealth users are still concerned about areas such as security breaches, real-time data invasion, surveillance, and how companies use the data collected from these devices. The findings reveal that more than 75% of the posts analyzed were categorized as depicting anger, fear, or demonstrating levels of disgust. Additionally, 70% of the posts exhibited negative sentiments, whereas 26% were positive, which indicates that users are ambivalent concerning privacy and security, notwithstanding mentions of privacy or security issues in their posts

Social media narratives in non-communicable disease: their dynamics and value for patients, communities and health researchers

Background: Usage of social media is now widespread and growing, as is the number of people living with Non-Communicable Diseases (NCDs) such as diabetes and cancer. This thesis examines how social media are being used to share or discuss NCDs and the benefits, challenges and implications of these trends as a manifestation of digital public health. Aim and research questions: The aim of this research is to address the gap in empirical, evidence-based research into the secondary use of data from social media to understand patient health issues and inform public health research into NCDs. To this end, seven research questions, each linked to a sub-project, were defined and tested during the course of the six-year programme: 1.What is the status of the existing multi-disciplinary research literature based on analysis of data posted on social media for public health research, and where are the gaps in this research? 2.Can existing systematic review methods be re-purposed and applied to analyse data posted on social media? 3.How are research sponsors and researchers addressing the ethical challenges of analysing data posted on social media? 4.To what extent are diabetes-related posts on Twitter relevant to the clinical condition and what topics and intentions are represented in these posts? 5.In what ways do people affected by Type 1 diabetes use different social media (e.g. for social interaction, support-seeking, information-sharing) and what are the implications for researchers wishing to use these data sources in their studies? 6.Are these differences in platform usage and associated data types also seen in people affected by lung cancer? 7.Can characteristic illness trajectories be seen in a cancer patient’s digital narrative and what insights can be gained to inform palliative care services? Methods: A range of different qualitative and quantitative methods and frameworks were used to address each of the research questions listed. Arksey and O’Malley’s five-stage scoping review framework and the PRISMA guidelines are applied to the systematic scoping review of existing literature. The PRISMA guidelines and checklist are re-purposed and applied to the manual extraction and analysis of social media posts. Bjerglund-Andersen and Söderqvist’s typology of social media uses in research and Conway’s taxonomy of ethical considerations are used to classify the ethics guidelines available to researchers. The findings of these were used to inform the research design of the four empirical studies. The methods applied in the conduct of the empirical studies include a content and narrative analysis of cross-sectional and longitudinal data sourced from Twitter, Facebook, the Type 1 diabetes discussion forum on Diabetes.co.uk and the lung cancer discussion forum on Macmillan.org.uk, as well as the application of Bales’ Interaction Process Analysis and Emanuel and Emanuel’s framework for a good death. Results : Of the 49 systematic, quasi-systematic and scoping reviews identified, 24 relate to the secondary use of data from social media, with eight of these focused on infectious disease surveillance and only two on NCDs. Existing reviews tend to be fragmented, narrow in scope and siloed in different academic communities, with limited consideration of the different types of data, analytical methods and ethical issues involved, therefore creating a need for further reviews to synthesise the emerging evidence-base. The rapid increase in the volume of published research is evident, from the results of RQ1, with 87% of the eligible studies published between 2013-2017. Of the 105 eligible empirical studies that focused on NCDs, cancer (54%) and diabetes (20%) dominate the literature. Data is sourced from Twitter (26%), Facebook (14%) and blogs (10%), conducted, published and funded by the medical community. Since 2012, automated methods have increasingly been applied to extract and analyse large volumes of data. Those that use manual methods for extraction did not apply a consistent approach to doing so; the PRISMA guidelines and checklist were therefore re-purposed and applied to analyse data extracted from social media in response to RQ2. The deficit of ethical guidance available to inform research that involves social media data was also identified as a result of RQ3 and the guidelines provided by the ESRC, BPS, AoIR and NIHR were prioritised for the purposes of this research project. Results from the four empirical studies (RQ4-7) reveal that different forms of social interaction and support are represented in the variety of social media platforms available and that this is influenced by the type and nature of the condition with which people are affected, as well as the affordances offered by such platforms. In the pilot study associated with RQ4, Twitter was identified as a ‘noisy’ source of data about diabetes, with only 66% of the sample being relevant to the clinical condition. Twelve per cent of the eligible sample was associated with Type 2 diabetes, compared to 6% for Type 1, and most were information-giving in nature (49%) and correlated with the diagnosis, treatment and management of the condition (44%). A comparison of Twitter to the Type 1 Diabetes community on Facebook and the discussion forum on Diabetes.co.uk for RQ5 indicated that all three social media platforms were used to disseminate information about the condition. However, the Type 1 Diabetes Group on Facebook and the Type 1 discussion forum on Diabetes.co.uk were also used for social interaction and peer support, hence defying the generalisations made in public health studies, where social media platforms were often considered equal or synonymous. The results from the third empirical study into lung cancer (RQ6) support this, indicating that, by virtue of their digital architecture, user base and self-moderating communities, the Lung Cancer Support Group on Facebook and the lung cancer discussion forum on Macmillan.org.uk are more successful in their utility for social interaction and emotional and informational support. Meanwhile, the sample derived from Twitter hashtags showed greater companionship support. The final empirical study in this PhD research project is associated with RQ7 and used longitudinal data posted by a terminally ill patient on Twitter. This revealed that patient activity on social media mirrors the different phases of the end-of-life illness trajectory described in the literature and that it is comparable to or compliments insights garnered using more traditional qualitative research techniques. It also shows the value of such innovative methods for understanding how terminal disease is experienced by and affects individuals, how they cope, how support is sought and obtained and how patients feel about the ability of palliative care services to meet their needs at different stages. Conclusions: The analysis of health data posted on social media continues to be an expanding and evolving field of multi-disciplinary research. The results of the studies included in this thesis reveal the emergence of new methods and ethical considerations to inform research design as well as ethics policy. The re-purposed PRISMA guidelines and checklist were presented at the 2014 Medicine 2.0 Summit and World Congress whilst the review of ethical guidelines was published in the Research Ethics journal. The four empirical studies that extracted and analysed data from social media provide novel insight into the social narratives of those impacted by diabetes and cancer and can be used to inform future research and practice. The results of these studies have, to date, been presented at four international conferences and published in npj Digital Medicine and BMC Palliative Care. Although this thesis and associated publications contribute to an emerging body of knowledge, further research is warranted into the manual versus automated techniques that can be applied and the differences in social interaction and support needed by people affected by different NCDs

Digitalisation and COVID-19: The Perfect Storm

\u201cA ship in the harbour is safe, but that is not what ships are built for,\u201d observed that sage 19th century philosopher William Shedd. In other words, technology of high potential is of little value if the potential is not exploited. As the shape of 2020 is increasingly defined by the coronavirus pandemic, digitalisation is like a ship loaded with technology that has a huge capacity for transforming mankind\u2019s combat against infectious disease. But it is still moored safely in harbour. Instead of sailing bravely into battle, it remains at the dockside, cowering from the storm beyond the breakwaters. Engineers and fitters constantly fine-tune it, and its officers and deckhands perfect their operating procedures, but that promise is unfulfilled, restrained by the hesitancy and indecision of officialdom. Out there, the seas of the pandemic are turbulent and uncharted, and it is impossible to know in advance everything of the other dangers that may lurk beyond those cloudy horizons. However, the more noble course is for orders to be given to complete the preparations, to cast off and set sail, and to join other vessels crewed by valiant healthcare workers and tireless researchers, already deeply engaged in a rescue mission for the whole of the human race. It is the destiny of digitalisation to navigate those oceans alongside other members of that task force, and the hour of destiny has arrived. This article focuses on the potential enablers and recommendation to maximise learnings during the era of COVID-19

The Digitalisation of African Agriculture Report 2018-2019

An inclusive, digitally-enabled agricultural transformation could help achieve meaningful livelihood improvements for Africa’s smallholder farmers and pastoralists. It could drive greater engagement in agriculture from women and youth and create employment opportunities along the value chain. At CTA we staked a claim on this power of digitalisation to more systematically transform agriculture early on. Digitalisation, focusing on not individual ICTs but the application of these technologies to entire value chains, is a theme that cuts across all of our work. In youth entrepreneurship, we are fostering a new breed of young ICT ‘agripreneurs’. In climate-smart agriculture multiple projects provide information that can help towards building resilience for smallholder farmers. And in women empowerment we are supporting digital platforms to drive greater inclusion for women entrepreneurs in agricultural value chains

Emerging Challenges and Opportunities in Infectious Disease Epidemiology.

Much of the intellectual tradition of modern epidemiology stems from efforts to understand and combat chronic diseases persisting through the 20th century epidemiologic transition of countries such as the United States and United Kingdom. After decades of relative obscurity, infectious disease epidemiology has undergone an intellectual rebirth in recent years amid increasing recognition of the threat posed by both new and familiar pathogens. Here, we review the emerging coalescence of infectious disease epidemiology around a core set of study designs and statistical methods bearing little resemblance to the chronic disease epidemiology toolkit. We offer our outlook on challenges and opportunities facing the field, including the integration of novel molecular and digital information sources into disease surveillance, the assimilation of such data into models of pathogen spread, and the increasing contribution of models to public health practice. We next consider emerging paradigms in causal inference for infectious diseases, ranging from approaches to evaluating vaccines and antimicrobial therapies to the task of ascribing clinical syndromes to etiologic microorganisms, an age-old problem transformed by our increasing ability to characterize human-associated microbiota. These areas represent an increasingly important component of epidemiology training programs for future generations of researchers and practitioners

Algorithmic autoimmunity in the NHS : radicalisation and the clinic

This article explores the extension of counter-radicalisation practice into the National Health Service (NHS). In the 2011 reformulation of the UK Prevent strategy, the NHS became a key sector for the identification and suppression of ‘radicalisation’. Optometrists, dentists, doctors and nurses have been incorporated into counter-terrorism and trained to report signs of radicalisation in patients and staff. This article explores how calculative modalities associated with big data and digital analytics have been translated into the non-digital realm. The surveillance of the whole of the population through the NHS indicates a dramatic policy shift away from linear profiling of those ‘suspect communities’ previously considered vulnerable to radicalisation. Fixed indicators of radicalisation and risk profiles no longer reduce the sample size for surveillance by distinguishing between risky and non-risky bodies. Instead, the UK government chose the NHS as a pre-eminent site for counter-terrorism because of the large amount of contact it has with the public. The UK government is developing a novel counter-terrorism policy in the NHS around large-N surveillance and inductive calculation, which demonstrates a translation of algorithmic modalities and calculative regimes. This article argues that this translation produces an autoimmune moment in British security discourse whereby the distinction between suspicious and non-suspicious bodies has collapsed. It explores the training provided to NHS staff, arguing that fixed profiles no longer guide surveillance: rather, surveillance inductively produces the terrorist profile

Data information literacy instruction in Business and Public Health: Comparative case studies

Employers need a workforce capable of using data to create actionable information. This requires students to develop data information literacy competencies that enable them to navigate and create meaning in an increasingly complex information world. This article examines why data information literacy should be integrated into program curricula, specifically in the instances of business and public health, and offers strategies for how it can be accomplished. We approach this as a comparative case study within undergraduate business and master of public health programs at Indiana University-Purdue University Indianapolis. These case studies reveal several implications for practice that apply across social and health sciences programs

Digital Data Sources and Their Impact on People's Health: A Systematic Review of Systematic Reviews

Background: Digital data sources have become ubiquitous in modern culture in the era of digital technology but often tend to be under-researched because of restricted access to data sources due to fragmentation, privacy issues, or industry ownership, and the methodological complexity of demonstrating their measurable impact on human health. Even though new big data sources have shown unprecedented potential for disease diagnosis and outbreak detection, we need to investigate results in the existing literature to gain a comprehensive understanding of their impact on and benefits to human health. / Objective: A systematic review of systematic reviews on identifying digital data sources and their impact area on people's health, including challenges, opportunities, and good practices. Methods: A multidatabase search was performed. Peer-reviewed papers published between January 2010 and November 2020 relevant to digital data sources on health were extracted, assessed, and reviewed. / Results: The 64 reviews are covered by three domains, that is, universal health coverage (UHC), public health emergencies, and healthier populations, defined in WHO's General Programme of Work, 2019-2023, and the European Programme of Work, 2020-2025. In all three categories, social media platforms are the most popular digital data source, accounting for 47% (N = 8), 84% (N = 11), and 76% (N = 26) of studies, respectively. The second most utilized data source are electronic health records (EHRs) (N = 13), followed by websites (N = 7) and mass media (N = 5). In all three categories, the most studied impact of digital data sources is on prevention, management, and intervention of diseases (N = 40), and as a tool, there are also many studies (N = 10) on early warning systems for infectious diseases. However, they could also pose health hazards (N = 13), for instance, by exacerbating mental health issues and promoting smoking and drinking behavior among young people. / Conclusions: The digital data sources presented are essential for collecting and mining information about human health. The key impact of social media, electronic health records, and websites is in the area of infectious diseases and early warning systems, and in the area of personal health, that is, on mental health and smoking and drinking prevention. However, further research is required to address privacy, trust, transparency, and interoperability to leverage the potential of data held in multiple datastores and systems. This study also identified the apparent gap in systematic reviews investigating the novel big data streams, Internet of Things (IoT) data streams, and sensor, mobile, and GPS data researched using artificial intelligence, complex network, and other computer science methods, as in this domain systematic reviews are not common