Paper by Riccardo Gallotti, Davide Maniscalco, Marc Barthelemy & Manlio De Domenico: “The description of human mobility is at the core of many fundamental applications ranging from urbanism and transportation to epidemics containment. Data about human movements, once scarce, is now widely available thanks to new sources such as phone call detail records, GPS devices, or Smartphone apps. Nevertheless, it is still common to rely on a single dataset by implicitly assuming that the statistical properties observed are robust regardless of data gathering and processing techniques. Here, we test this assumption on a broad scale by comparing human mobility datasets obtained from 7 different data-sources, tracing 500+ millions individuals in 145 countries. We report wide quantifiable differences in the resulting mobility networks and in the displacement distribution. These variations impact processes taking place on these networks like epidemic spreading. Our results point to the need for disclosing the data processing and, overall, to follow good practices to ensure robust and reproducible results…(More)”
Citizen science as an instrument for women’s health research
Paper by Sarah Ahannach et al: “Women’s health research is receiving increasing attention globally, but considerable knowledge gaps remain. Across many fields of research, active involvement of citizens in science has emerged as a promising strategy to help align scientific research with societal needs. Citizen science offers researchers the opportunity for large-scale sampling and data acquisition while engaging the public in a co-creative approach that solicits their input on study aims, research design, data gathering and analysis. Here, we argue that citizen science has the potential to generate new data and insights that advance women’s health. Based on our experience with the international Isala project, which used a citizen-science approach to study the female microbiome and its influence on health, we address key challenges and lessons for generating a holistic, community-centered approach to women’s health research. We advocate for interdisciplinary collaborations to fully leverage citizen science in women’s health toward a more inclusive research landscape that amplifies underrepresented voices, challenges taboos around intimate health topics and prioritizes women’s involvement in shaping health research agendas…(More)”.
Social licence for health data
Evidence Brief by NSW Government: “Social licence, otherwise referred to as social licence to operate, refers to an approval or consensus from the society members or the community for the users, either as a public or private enterprise or individual, to use their health data as desired or accepted under certain conditions. Social licence is a dynamic and fluid concept and is subject to change over time often influenced by societal and contextual factors.
The social licence is usually indicated through ongoing engagement and negotiations with the public and is not a contract with strict terms and conditions. It is, rather, a moral and ethical responsibility assumed by the data users based on trust and legitimacy, It supplements the techno-legal mechanisms to regulate the use of data.
For example, through public engagement, certain values and principles can emerge as pertinent to public support for using their data. Similarly, the public may view certain activities relating to their data use as acceptable and beneficial, implying their permission for certain activities or usecase scenarios. Internationally, although not always explicitly referred to as a social licence, the most common approach to establishing public trust and support and identifying common grounds or agreements on acceptable practices for use of data is through public engagement. Engagement methods and mechanisms for gaining public perspectives vary across countries (Table 1).
− Canada – Health Data Research Network Canada reports on social licence for uses of health data, based on deliberative discussions with 20 experienced public and patient advisors. The output is a list of agreements and disagreements on what uses and users of health data have social licence.
− New Zealand – In 2022, the Ministry of Health commissioned a survey on public perceptions on use of personal health information. This report identified conditions under which the public supports the re-use of their data…(More)”.
Privacy during pandemics: Attitudes to public use of personal data
Paper by Eleonora Freddi and Ole Christian Wasenden: “In this paper we investigate people’s attitudes to privacy and sharing of personal data when used to help society combat a contagious disease, such as COVID-19. Through a two-wave survey, we investigate the role of personal characteristics, and the effect of information, in shaping privacy attitudes. By conducting the survey in Norway and Sweden, which adopted very different strategies to handle the COVID-19 pandemic, we analyze potential differences in privacy attitudes due to policy changes. We find that privacy concern is negatively correlated with allowing public use of personal data. Trust in the entity collecting data and collectivist preferences are positively correlated with this type of data usage. Providing more information about the public benefit of sharing personal data makes respondents more positive to the use of their data, while providing additional information about the costs associated with data sharing does not change attitudes. The analysis suggests that stating a clear purpose and benefit for the data collection makes respondents more positive about sharing. Despite very different policy approaches, we do not find any major differences in privacy attitudes between Norway and Sweden. Findings are also similar between the two survey waves, suggesting a minor role for contextual changes…(More)”
Uniting the UK’s Health Data: A Huge Opportunity for Society’
The Sudlow Review (UK): “…Surveys show that people in the UK overwhelmingly support the use of their health data with appropriate safeguards to improve lives. One of the review’s recommendations calls for continued engagement with patients, the public, and healthcare professionals to drive forward developments in health data research.
The review also features several examples of harnessing health data for public benefit in the UK, such as the national response to the COVID-19 pandemic. But successes like these are few and far between due to complex systems and governance. The review reveals that:
- Access to datasets is difficult or slow, often taking months or even years.
- Data is accessible for analysis and research related to COVID-19, but not to tackle other health conditions, such as other infectious diseases, cancer, heart disease, stroke, diabetes and dementia.
- More complex types of health data generally don’t have national data systems (for example, most lab testing data and radiology imaging).
- Barriers like these can delay or prevent hundreds of studies, holding back progress that could improve lives…
The Sudlow Review’s recommendations provide a pathway to establishing a secure and trusted health data system for the UK:
- Major national public bodies with responsibility for or interest in health data should agree a coordinated joint strategy to recognise England’s health data for what they are: a critical national infrastructure.
- Key government health, care and research bodies should establish a national health data service in England with accountable senior leadership.
- The Department of Health and Social Care should oversee and commission ongoing, coordinated, engagement with patients, public, health professionals, policymakers and politicians.
- The health and social care departments in the four UK nations should set a UK-wide approach to streamline data access processes and foster proportionate, trustworthy data governance.
- National health data organisations and statistical authorities in the four UK nations should develop a UK-wide system for standards and accreditation of secure data environments (SDEs) holding data from the health and care system…(More)”.
Lifecycles, pipelines, and value chains: toward a focus on events in responsible artificial intelligence for health
Paper by Joseph Donia et al: “Process-oriented approaches to the responsible development, implementation, and oversight of artificial intelligence (AI) systems have proliferated in recent years. Variously referred to as lifecycles, pipelines, or value chains, these approaches demonstrate a common focus on systematically mapping key activities and normative considerations throughout the development and use of AI systems. At the same time, these approaches risk focusing on proximal activities of development and use at the expense of a focus on the events and value conflicts that shape how key decisions are made in practice. In this article we report on the results of an ‘embedded’ ethics research study focused on SPOTT– a ‘Smart Physiotherapy Tracking Technology’ employing AI and undergoing development and commercialization at an academic health sciences centre. Through interviews and focus groups with the development and commercialization team, patients, and policy and ethics experts, we suggest that a more expansive design and development lifecycle shaped by key events offers a more robust approach to normative analysis of digital health technologies, especially where those technologies’ actual uses are underspecified or in flux. We introduce five of these key events, outlining their implications for responsible design and governance of AI for health, and present a set of critical questions intended for others doing applied ethics and policy work. We briefly conclude with a reflection on the value of this approach for engaging with health AI ecosystems more broadly…(More)”.
What AI Can Do for Your Country
Article by Jylana L. Sheats: “..Although most discussions of artificial intelligence focus on its impacts on business and research, AI is also poised to transform government in the United States and beyond. AI-guided disaster response is just one piece of the picture. The U.S. Department of Health and Human Services has an experimental AI program to diagnose COVID-19 and flu cases by analyzing the sound of patients coughing into their smartphones. The Department of Justice uses AI algorithms to help prioritize which tips in the FBI’s Threat Intake Processing System to act on first. Other proposals, still at the concept stage, aim to extend the applications of AI to improve the efficiency and effectiveness of nearly every aspect of public services.
The early applications illustrate the potential for AI to make government operations more effective and responsive. They illustrate the looming challenges, too. The federal government will have to recruit, train, and retain skilled workers capable of managing the new technology, competing with the private sector for top talent. The government also faces a daunting task ensuring the ethical and equitable use of AI. Relying on algorithms to direct disaster relief or to flag high-priority crimes raises immediate concerns: What if biases built into the AI overlook some of the groups that most need assistance, or unfairly target certain populations? As AI becomes embedded into more government operations, the opportunities for misuse and unintended consequences will only expand…(More)”.
Use of large language models as a scalable approach to understanding public health discourse
Paper by Laura Espinosa and Marcel Salathé: “Online public health discourse is becoming more and more important in shaping public health dynamics. Large Language Models (LLMs) offer a scalable solution for analysing the vast amounts of unstructured text found on online platforms. Here, we explore the effectiveness of Large Language Models (LLMs), including GPT models and open-source alternatives, for extracting public stances towards vaccination from social media posts. Using an expert-annotated dataset of social media posts related to vaccination, we applied various LLMs and a rule-based sentiment analysis tool to classify the stance towards vaccination. We assessed the accuracy of these methods through comparisons with expert annotations and annotations obtained through crowdsourcing. Our results demonstrate that few-shot prompting of best-in-class LLMs are the best performing methods, and that all alternatives have significant risks of substantial misclassification. The study highlights the potential of LLMs as a scalable tool for public health professionals to quickly gauge public opinion on health policies and interventions, offering an efficient alternative to traditional data analysis methods. With the continuous advancement in LLM development, the integration of these models into public health surveillance systems could substantially improve our ability to monitor and respond to changing public health attitudes…(More)”.
Asserting the public interest in health data: On the ethics of data governance for biobanks and insurers
Paper by Kathryne Metcalf and Jathan Sadowski : “Recent reporting has revealed that the UK Biobank (UKB)—a large, publicly-funded research database containing highly-sensitive health records of over half a million participants—has shared its data with private insurance companies seeking to develop actuarial AI systems for analyzing risk and predicting health. While news reports have characterized this as a significant breach of public trust, the UKB contends that insurance research is “in the public interest,” and that all research participants are adequately protected from the possibility of insurance discrimination via data de-identification. Here, we contest both of these claims. Insurers use population data to identify novel categories of risk, which become fodder in the production of black-boxed actuarial algorithms. The deployment of these algorithms, as we argue, has the potential to increase inequality in health and decrease access to insurance. Importantly, these types of harms are not limited just to UKB participants: instead, they are likely to proliferate unevenly across various populations within global insurance markets via practices of profiling and sorting based on the synthesis of multiple data sources, alongside advances in data analysis capabilities, over space/time. This necessitates a significantly expanded understanding of the publics who must be involved in biobank governance and data-sharing decisions involving insurers…(More)”.
As AI-powered health care expands, experts warn of biases
Article by Marta Biino: “Google’s DeepMind artificial intelligence research laboratory and German pharma company BioNTech are both building AI-powered lab assistants to help scientists conduct experiments and perform tasks, the Financial Times reported.
It’s the latest example of how developments in artificial intelligence are revolutionizing a number of fields, including medicine. While AI has long been used in radiology, for image analysis, or oncology to classify skin lesions for example, as the technology continues to advance its applications are growing.
OpenAI’s GPT models have outperformed humans in making cancer diagnoses based on MRI reports and beat PhD-holders in standardized science tests, to name a few.
However, as AI’s use in health care expands, some fear the notoriously biased technology could carry negative repercussions for patients…(More)”.