The web is full of junk health info. This startup wants to change that

Curated on Posted on by Stefaan Verhulst

Daphne Leprince-Ringuet at ZDNet: “A crowdsourcing platform aims to provide better insight into health issues than is currently available….In the age of social media, blogs, and online forums, the most common practice when feeling slightly under the weather has undeniably become to resort to a quick Google search. Unfortunately, when they are not unnecessarily worrying, the answers found on the web are typically inconclusive. That observation is what prompted Israeli entrepreneur Yael Elish to launch StuffThatWorks, an AI-based online platform that collects crowdsourced data about a host of chronic conditions.

The idea being that, unlike Facebook groups or Reddit threads, the information shared by patients is centralized and assessed for quality to readily provide informed data to other users who are enquiring about their own symptoms. Healthline cuts through the confusion with straightforward, expert-reviewed, person-first experiences — all designed to help you make the best decisions. Elish is a former member of the founding team for crowdsourced navigation app Waze, but this time instead of tapping user-generated content to come up with traffic predictions and accident warnings, StuffThatWorks is intended to give users better insights into illness…(More)”.

Tackling misinformation during crisis

Curated on Posted on by Stefaan Verhulst

Paper by Elizabether Seger and Mark Briers: “The current COVID-19 pandemic and the accompanying ‘infodemic’ clearly illustrate that access to reliable information is crucial to coordinating a timely crisis response in democratic societies. Inaccurate information and the muzzling of important information sources have degraded trust in health authorities and slowed public response to the crisis. Misinformation about ineffective cures, the origins and malicious spread of COVID-19, unverified treatment discoveries, and the efficacy of face coverings have increased the difficulty of coordinating a unified public response during the crisis. 

In a recent report, researchers at the Cambridge Centre for the Study of Existential Risk (CSER) in collaboration with The Alan Turing Institute and the Defence Science and Technology Laboratory (Dstl) workshopped an array of hypothetical crisis scenarios to investigate social and technological factors that interfere with well-informed decision-making and timely collective action in democratic societies.

Crisis scenarios

Crisis scenarios are useful tools for appraising threats and vulnerabilities to systems of information production, dissemination, and evaluation. Factors influencing how robust a society is to such threats and vulnerabilities are not always obvious when life is relatively tranquil but are often highlighted under the stress of a crisis. 

CSER and Dstl workshop organisers, together with workshop participants (a diverse group of professionals interested in topics related to [mis/dis]information, information technology, and crisis response), co-developed and explored six hypothetical crisis scenarios and complex challenges:

  • Global health crisis
  • Character assassination
  • State fake news campaign
  • Economic collapse
  • Xenophobic ethnic cleansing
  • Epistemic babble, where the ability for the general population to tell the difference between truth and fiction (presented as truth) is lost

We analysed each scenario to identify various interest groups and actors, to pinpoint vulnerabilities in systems of information production and exchange, and to visualise how the system might be interfered with. We also considered interventions that could help bolster the society against threats to informed decision-making.

The systems map below is an example from workshop scenario 1: Global health crisis. The map shows how adversarial actors (red) and groups working to mitigate the crisis (blue) interact, impact each other’s actions, and influence the general public and other interest groups (green) such as those affected by the health crisis. 

Systems maps help visualise vulnerabilities in both red and blue actor systems, which, in turn, helps identify areas where intervention (yellow) is possible to help mitigate the crisis….(More)“

Putting Games to Work in the Battle Against COVID-19

Curated on Posted on by Stefaan Verhulst

Sara Frueh at the National Academies: “While video games often give us a way to explore other worlds, they can also help us learn more about our own — including how to navigate a pandemic. That was the premise underlying “Jamming the Curve,” a competition that enlisted over 400 independent video game developers around the world to develop concepts for games that reflect the real-world dynamics of COVID-19.

“Games can help connect our individual actions to larger-scale impact … and help translate data into engaging stories,” said Rick Thomas, associate program officer of LabX, a program of the National Academy of Sciences that supports creative approaches to public engagement.

Working with partners IndieCade and Georgia Tech, LabX brought Jamming the Curve to life over two weeks in September.

The “game jam” generated over 50 game concepts that drop players into a wide array of roles — from a subway rider trying to minimize the spread of infection among passengers, to a grocery store cashier trying to help customers while avoiding COVID-19, to a fox ninja tasked with dispensing masks to other forest creatures.

The five winning game concepts (see below) were announced at an award ceremony in late October, where each winning team was given a $1,000 prize and the chance to compete for a $20,000 grant to develop their game further.

The power of games

“Sometimes public health concepts can be a little dry,” said Carla Alvarado, a public health expert and program officer at the National Academies who served as a judge for the competition, during the awards ceremony. “Games package that information — it’s bite-sized, it’s digestible, and it’s palatable.”

And because games engage the senses and involve movement, they help people remember what they learn, she said. “That type of learning — experiential learning — helps retain a lot of the concepts.”

The idea of doing a game jam around COVID-19 began when Janet Murray of Georgia Tech reached out to Stephanie Barish and her colleagues at IndieCade about games’ potential to help express the complicated data around the disease. “Not everybody really knows how to look at that all of that information, and games are so wonderful at reaching people in ways that people understand,” Barish said.

Rick Thomas and the LabX team heard about the idea for Jamming the Curve and saw how they could contribute. The program had experience organizing other game projects around role-playing and storytelling — along with access to a range of scientists and public health experts through the National Academies’ networks.

“Given the high stakes of the topic around COVID-19 and the amount of misinformation around the pandemic, we really needed to make sure that we were doing this right when it came to creating these games,” said Thomas. LabX helped to recruit public health professionals involved in the COVID-19 response, as well as experts in science communication and risk perception, to serve as mentors to the game developers.

Play the Winning Games!

Trailers and some playable prototypes for the five winning game concepts can be found online:

  • Everyday Hero, in which players work to stop the spread of COVID-19 through measures such as social distancing and mask use
  • PandeManager, which gives players the job of a town’s mayor who must slow the spread of disease among citizens
  • Lab Hero, in which users play a first responder who is working hard to find a vaccine while following proper health protocols
  • Cat Colony Crisis, in which a ship of space-faring cats must deal with a mysterious disease outbreak
  • Outbreak in Space, which challenges players to save friends and family from a spreading epidemic in an alien world

All of the games submitted to Jamming the Curve can be found at itch.io.

The games needed to be fun as well as scientifically accurate — and so IndieCade, Georgia Tech, and Seattle Indies recruited gaming experts who could advise participants on how to make their creations engaging and easy to understand….(More)“.

COVID-19 Data and Data Sharing Agreements: The Potential of Sunset Clauses and Sunset Provisions

Curated on Posted on by Stefaan Verhulst

A report by SDSN TReNDS and DataReady Limited on behalf of Contracts4DataCollaboration: “Building upon issues discussed in the C4DC report, “Laying the Foundation for Effective Partnerships: An Examination of Data Sharing Agreements,” this brief examines the potential of sunset clauses or sunset provisions to be a legally binding, enforceable, and accountable way of ensuring COVID-19 related data sharing agreements are wound down responsibly at the end of the pandemic. The brief is divided into four substantive parts: Part I introduces sunset clauses as legislative tools, highlighting a number of examples of how they have been used in both COVID-19 related and other contexts; Part II discusses sunset provisions in the context of data sharing agreements and attempts to explain the complex interrelationship between data ownership, intellectual property, and sunset provisions; Part III identifies some key issues policymakers should consider when assessing the utility and viability of sunset provisions within their data sharing agreements and arrangements; and Part IV highlights the value of a memorandum of understanding (MoU) as a viable vehicle for sunset provisions in contexts where data sharing agreements are either non-existent or not regularly used….(More)“.(Contracts 4 Data Collaboration Framework).

NIH Releases New Policy for Data Management and Sharing

Curated on Posted on by Stefaan Verhulst

NIH Blogpost by Carrie Wolinetz: “Today, nearly twenty years after the publication of the Final NIH Statement on Sharing Research Data in 2003, we have released a Final NIH Policy for Data Management and Sharing. This represents the agency’s continued commitment to share and make broadly available the results of publicly funded biomedical research. We hope it will be a critical step in moving towards a culture change, in which data management and sharing is seen as integral to the conduct of research. Responsible data management and sharing is good for science; it maximizes availability of data to the best and brightest minds, underlies reproducibility, honors the participation of human participants by ensuring their data is both protected and fully utilized, and provides an element of transparency to ensure public trust and accountability.

This policy has been years in the making and has benefited enormously from feedback and input from stakeholders throughout the process. We are grateful to all those who took the time to comment on Request for Information, the Draft policy, or to participate in workshops or Tribal consultations. That thoughtful feedback has helped shape the Final policy, which we believe strikes a balance between reasonable expectations for data sharing and flexibility to allow for a diversity of data types and circumstances. How we incorporated public comments and decision points that led to the Final policy are detailed in the Preamble to the DMS policy.

The Final policy applies to all research funded or conducted by NIH that results in the generation of scientific data. The Final Policy has two main requirements (1) the submission of a Data Management and Sharing Plan (Plan); and (2) compliance with the approved Plan. We are asking for Plans at the time of submission of the application, because we believe planning and budgeting for data management and sharing needs to occur hand in hand with planning the research itself. NIH recognizes that science evolves throughout the research process, which is why we have built in the ability to update DMS Plans, but at the end of the day, we are expecting investigators and institutions to be accountable to the Plans they have laid out for themselves….

Anticipating that variation in readiness, and in recognition of the cultural change we are trying to seed, there is a two-year implementation period. This time will be spent developing the information, support, and tools that the biomedical enterprise will need to comply with this new policy. NIH has already provided additional supplementary information – on (1) elements of a data management and sharing plan; (2) allowable costs; and (3) selecting a data repository – in concert with the policy release….(More)”

To mitigate the costs of future pandemics, establish a common data space

Curated on Posted on by Stefaan Verhulst

Article by Stephanie Chin and Caitlin Chin: “To improve data sharing during global public health crises, it is time to explore the establishment of a common data space for highly infectious diseases. Common data spaces integrate multiple data sources, enabling a more comprehensive analysis of data based on greater volume, range, and access. At its essence, a common data space is like a public library system, which has collections of different types of resources from books to video games; processes to integrate new resources and to borrow resources from other libraries; a catalog system to organize, sort, and search through resources; a library card system to manage users and authorization; and even curated collections or displays that highlight themes among resources.

Even before the COVID-19 pandemic, there was significant momentum to make critical data more widely accessible. In the United States, Title II of the Foundations for Evidence-Based Policymaking Act of 2018, or the OPEN Government Data Act, requires federal agencies to publish their information online as open data, using standardized, machine-readable data formats. This information is now available on the federal data.gov catalog and includes 50 state- or regional-level data hubs and 47 city- or county-level data hubs. In Europe, the European Commission released a data strategy in February 2020 that calls for common data spaces in nine sectors, including healthcare, shared by EU businesses and governments.

Going further, a common data space could help identify outbreaks and accelerate the development of new treatments by compiling line list incidence data, epidemiological information and models, genome and protein sequencing, testing protocols, results of clinical trials, passive environmental monitoring data, and more.

Moreover, it could foster a common understanding and consensus around the facts—a prerequisite to reach international buy-in on policies to address situations unique to COVID-19 or future pandemics, such as the distribution of medical equipment and PPE, disruption to the tourism industry and global supply chains, social distancing or quarantine, and mass closures of businesses….(More). See also Call for Action for a Data Infrastructure to tackle Pandemics and other Dynamic Threats.

Tracking COVID-19: U.S. Public Health Surveillance and Data

Curated on Posted on by Stefaan Verhulst

CRS Report: “Public health surveillance, or ongoing data collection, is an essential part of public health practice. Particularly during a pandemic, timely data are important to understanding the epidemiology of a disease in order to craft policy and guide response decision making. Many aspects of public health surveillance—such as which data are collected and how—are often governed by law and policy at the state and sub federal level, though informed by programs and expertise at the Centers for Disease Control and Prevention (CDC). The Coronavirus Disease 2019 (COVID-19) pandemic has exposed limitations and challenges with U.S. public health surveillance, including those related to the timeliness, completeness, and accuracy of data.

This report provides an overview of U.S. public health surveillance, current COVID-19 surveillance and data collection, and selected policy issues that have been highlighted by the pandemic.Appendix B includes a compilation of selected COVID-19 data resources….(More)”.

The Potential Role Of Open Data In Mitigating The COVID-19 Pandemic: Challenges And Opportunities

Curated on Posted on by Stefaan Verhulst

Essay by Sunyoung Pyo, Luigi Reggi and Erika G. Martin: “…There is one tool for the COVID-19 response that was not as robust in past pandemics: open data. For about 15 years, a “quiet open data revolution” has led to the widespread availability of governmental data that are publicly accessible, available in multiple formats, free of charge, and with unlimited use and distribution rights. The underlying logic of open data’s value is that diverse users including researchers, practitioners, journalists, application developers, entrepreneurs, and other stakeholders will synthesize the data in novel ways to develop new insights and applications. Specific products have included providing the public with information about their providers and health care facilities, spotlighting issues such as high variation in the cost of medical procedures between facilities, and integrating food safety inspection reports into Yelp to help the public make informed decisions about where to dine. It is believed that these activities will in turn empower health care consumers and improve population health.

Here, we describe several use cases whereby open data have already been used globally in the COVID-19 response. We highlight major challenges to using these data and provide recommendations on how to foster a robust open data ecosystem to ensure that open data can be leveraged in both this pandemic and future public health emergencies…(More)” See also Repository of Open Data for Covid19 (OECD/TheGovLab)

Harnessing the wisdom of crowds can improve guideline compliance of antibiotic prescribers and support antimicrobial stewardship

Curated on Posted on by Stefaan Verhulst

Paper by Eva M. Krockow et al: “Antibiotic overprescribing is a global challenge contributing to rising levels of antibiotic resistance and mortality. We test a novel approach to antibiotic stewardship. Capitalising on the concept of “wisdom of crowds”, which states that a group’s collective judgement often outperforms the average individual, we test whether pooling treatment durations recommended by different prescribers can improve antibiotic prescribing. Using international survey data from 787 expert antibiotic prescribers, we run computer simulations to test the performance of the wisdom of crowds by comparing three data aggregation rules across different clinical cases and group sizes. We also identify patterns of prescribing bias in recommendations about antibiotic treatment durations to quantify current levels of overprescribing. Our results suggest that pooling the treatment recommendations (using the median) could improve guideline compliance in groups of three or more prescribers. Implications for antibiotic stewardship and the general improvement of medical decision making are discussed. Clinical applicability is likely to be greatest in the context of hospital ward rounds and larger, multidisciplinary team meetings, where complex patient cases are discussed and existing guidelines provide limited guidance….(More)“

Covid-19 is reshaping collective intelligence

Curated on Posted on by Stefaan Verhulst

Chris Zollinger at Diplomatic Courier: “What a difference a year makes. A survey in April showed that almost 40% of people in the EU had switched to remote work, while estimates in the U.S. range from 30-50%. The video conference has become a staple of our daily working lives in a way that would have been inconceivable 12 months ago, while virtual collaboration tools have become ubiquitous.  

Given the straightened economic climate, it is unsurprising that many businesses see the situation as an opportunity to permanently reduce their cost base. Facebook, for example, has announced that it expects half of its global workforce to work remotely within the next five to ten years, with Twitter, Barclays and Mondelez International making similar moves. On a purely financial level, this seems like a win-win for everyone concerned: employers can save on the capital and operational costs of providing office space, while employees can save the time and money that it would have cost to commute.

However, if we want to move beyond mere economic survival towards recovery and growth, we need to be more ambitious in our thinking. Rather than merely cutting costs, we now have the chance to drive greater innovation and productivity by building more flexible, remote teams. In addition to the cost and time savings associated with remote work, companies now have an opportunity to shift the focus of their recruitment to new geographic areas and hire talented new employees without the need for them to physically relocate. In this way, they can form purpose-built teams to solve specific tasks over a defined time period….(More)”.