Global Data Access for Solving Rare Disease: A Health Economics Value Framework

Curated on Posted on by Stefaan Verhulst

WEF Report: “…The genomic nature of rare disease suggests an opportunity. By bringing together genomic, phenotypic, and clinical data at a global scale, individual countries and hospitals carrying out genomics research could come up with more answers both to diagnose currently undiagnosed or misdiagnosed people with rare disease and to develop treatments.

With an estimated 15.2 million individuals expected to have clinical genomic testing for a rare condition within the next five years, it is time to evaluate the economic and societal benefits of developing a system that can share this data without compromising privacy.

The answer is a technical solution called a “federated data system”. This is a data superstructure that can aggregate remote data sets for querying while still allowing for localized, data control and security. The groupings are independent, but interoperable. They have their own governance and the information inside them is protected, but they offer evidence – conclusions gathered from the data – that can be used to feed a much larger, global data engine.

The result is a robust and well-annotated dataset that in the case of rare diseases can be added to and then used by different countries to enable global and country-specific solutions to diagnosis, treatment, patient trial recruitment and management of rare diseases. Developing federated data systems is one of the many investments countries are currently considering. Yet since its implementation can be costly (about half a million US dollars) is it the right solution?…(More)”.

Toward Building The Data Infrastructure And Ecosystem We Need To Tackle Pandemics And Other Dynamic Societal And Environmental Threats

Curated on Posted on by Stefaan Verhulst

CALL FOR ACTION: “The spread of COVID-19 is a human tragedy and a worldwide crisis. The social and economic costs are huge, and they are contributing to a global slowdown. Despite the amount of data collected daily, we have not been able to leverage them to accelerate our understanding and action to counter COVID-19. As a result we have entered a global state of profound uncertainty and anxiety.

The current pandemic has not only shown vulnerabilities in our public health systems but has also made visible our failure to re-use data between the public and private sectors — what we call data collaboratives — to inform decision makers how to fight dynamic threats like the novel Coronavirus.

We have known for years that the re-use of aggregated and anonymized data — including from telecommunications, social media, and satellite feeds — can improve traditional models for tracking disease propagation. Telecommunications data has, for instance, been re-used to support the response to Ebola in Africa (Orange) and swine flu in Mexico (Telefónica). Social media data has been re-used to understand public perceptions around Zika in Brazil (Facebook). Satellite data has been used to track seasonal measles in Niger using nighttime lights. Geospatial data has similarly supported malaria surveillance and eradication efforts in Sub-Saharan Africa. In general, many infectious diseases have been monitored using mobile phones and mobility.

The potential and realized contributions of these and other data collaboratives reveal that the supply of and demand for data and data expertise are widely dispersed. They are spread across government, the private sector, and civil society and often poorly matched.

Much data needed by researchers is never made accessible to those who could productively put it to use while much data that is released is never used in a systematic and sustainable way during and post crisis.

This failure results in tremendous inefficiencies and costly delays in how we respond. It means lost opportunities to save lives and a persistent lack of preparation for future threats….(More)”. SIGN AND JOIN HERE.

See also Living Repository of Data4COVID19 Collaboratives.

The Coronavirus Tech Handbook

Curated on Posted on by Stefaan Verhulst

About: “The Coronavirus Tech Handbook provides a space for technologists, specialists, civic organisations and public & private institutions to collaborate on a rapid and sophisticated response to the coronavirus outbreak. It is an active and evolving resource with thousands of expert contributors.

In less than two weeks it has grown to cover areas including:

  • Detailed guidance for doctors and nurses,
  • Advice and tools for educators adjusting to remote teaching, 
  • Community of open-source ventilator designers
  • Comprehensive data and models for forecasting the spread of the virus.

Coronavirus Tech Handbook’s goal is to create a rapidly evolving open source technical knowledge base that will help all institutions across civil society and the public sector collaborate to fight the outbreak. 

Coronavirus Tech Handbook is not a place for the public to get advice, but a place for specialists to collaborate and make sure the best solutions are quickly shared and deployed….(More)”.

How scientists are crowdsourcing a coronavirus treatment

Curated on Posted on by Stefaan Verhulst

Article by Evan Nicole Brown: “… There’s currently no cure for COVID-19, but scientists are working on drugs that could help slow its spread. Fortunately, citizens can get involved in the process.

Foldit is an online video game that challenges players to fold various proteins into shapes where they are stable. Generally, folding proteins allows scientists (and citizens) to design new proteins from scratch, but in the case of coronavirus, Foldit players are trying to design the drugs to combat it. “Coronavirus has a ‘spike’ protein that it uses to recognize human cells,” says Brian Koepnick, a biochemist and researcher with the University of Washington’s Institute for Protein Design who has been using Foldit for protein research for six years. “Foldit players are designing new protein drugs that can bind to the COVID spike and block this recognition, [which could] potentially stop the virus from infecting more cells in an individual who has already been exposed to the virus.”

“In Foldit, you change the shape of a protein model to optimize your score. This score is actually a sophisticated calculation of the fold’s potential energy,” says Koepnick, adding that professional researchers use an identical score function in their work. “The coronavirus puzzles are set up such that high-scoring models have a better chance of actually binding to the target spike protein.” Ultimately, high-scoring solutions are analyzed by researchers and considered for real-world use….(More)”.

Like Zika, The Public Is Heading To Wikipedia During The COVID-19 Coronavirus Pandemic

Curated on Posted on by Stefaan Verhulst

Farah Qaiser at Forbes: “A new study out in the PLOS Computational Biology journal shows that public attention in the midst of the Zika virus epidemic was largely driven by media coverage, rather than the epidemic’s magnitude or extent, highlighting the importance of mass media coverage when it comes to public health. This is reflected in the ongoing COVID-19 situation, where to date, the main 2019–20 coronavirus pandemic Wikipedia page has over ten million page views.

The 2015-2016 Zika virus epidemic began in Northeastern Brazil, and spread across South and North America. The Zika virus was largely spread by infected Aedes mosquitoes, where symptoms included a fever, headache, itching, and muscle pain. It could also be transmitted between pregnant women and their fetuses, causing microcephaly, where a baby’s head was much smaller than expected.

Similar to the ongoing COVID-19 situation, the media coverage around the Zika virus epidemic shaped public opinion and awareness.

“We knew that it was relevant, and very important, for public health to understand how the media and news shapes the attention of [the] public during epidemic outbreaks,” says Michele Tizzoni, a principal investigator based at the Institute for Scientific Interchange (ISI) Foundation. …

Today, the 2019–20 coronavirus pandemic Wikipedia page has around ten million page views. As per Toby Negrin, the Wikimedia Foundation’s Chief Product Officer, this page has been edited over 12K times by nearly 1,900 different editors. The page is currently semi-protected – a common practice for Wikipedia pages that are relevant to current news stories.

In an email, Negrin shared that “the day after the World Health Organization classified COVID-19 as a pandemic on March 11th, the main English Wikipedia article about the pandemic had nearly 1.1 million views, an increase of nearly 30% from the day before the WHO’s announcement (on March 10th, it had just over 809,000 views).” This is similar to the peaks in Wikipedia attention observed when official announcements took place during the Zika virus epidemic.

In addition, initial data from Tizzoni’s research group shows that the lockdown in Italy has resulted in a 50% or more decrease in movement between provinces. Similarly, Negrin notes that since the national lockdown in Italy, “total pageviews from Italy to all Wikimedia projects increased by nearly 30% over where they were at the same time last year.”

With increased public awareness during epidemics, tackling misinformation is critical. This remains important at Wikipedia.

“When it comes to documenting current events on Wikipedia, volunteers take even greater care to get the facts right,” stated Negrin, and pointed out that there is a page dedicated to misinformation during this pandemic, which has received over half a million views….(More)”.

Why no one is reading your coronavirus emails

Curated on Posted on by Stefaan Verhulst

Opinion by Todd Rogers: “…As a behavioral scientist, I study how people make decisions and process information, and I develop communications to change behavior for the better. And if there’s one lesson all the coronavirus email writers should take, it’s this: Messages should be as easy to understand as possible. This is difficult in normal times — and is no doubt much more so with facts on the ground changing as rapidly as they are….

As an illustration of how potent simplifying messaging can be, Carly Robinson at Harvard, Jessica Lasky-Fink of the University of California, Berkeley, Hedy Chang of Attendance Works and I conducted an experiment with a large school district, in which we rewrote a state-required notification about attendance.All schools in California are required to send a truancy notification to families after a student is late or absent three times. The state legislature offered recommended language for the notice that was written at a college-reading level and contained 342 words in seven-point font. We rewrote the letter at a 5th grade reading level, in 14-point font and with half as many words. We then randomly assigned 131,312 families to either receive the state-recommended language or a version of our simplified letter.The best version of our simplified letters was an estimated 40% more effective at reducing absences during the subsequent 30 days than the state-recommended language. Writing with an understanding of how humans work turns out to be more effective than writing with the sole goal of complying with the delivery of mandatory written information.So, what can be done to make coronavirus messages, so critical to the functioning of our country right now, easier to understand — and more likely to be read?

  • Write in the most accessible way possible. Use the Flesch-Kincaid readability test (built into Microsoft Word and Google Docs) to test the reading-level complexity of your writing.
  • Use as few words as possible. Shorter messages are more likely to be read (see the long email in your inbox from three months ago that you still have not read).
  • Write in a larger font. This makes long messages look ridiculous and makes it easier to read for recipients with eyesight issues. It also reduces the chance of the accidental — but way too common — occurrence of emails appearing in inboxes with absurdly small font.
  • Eliminate gratuitous borders and images. These can often distract from the message you are trying to send.
  • Use a clear structure. People skim, so help them. As opposed to a multi-paragraph email written in normal prose, consider categorizing information under headings like, “What we want you to know” (or just “KNOW”) and “what we would like you to do” (or, concisely, “DO”). Consider putting content within each category in bullet points….(More)”

Ex ante knowledge for infectious disease outbreaks : Introducing the organizational network governance approach

Curated on Posted on by Stefaan Verhulst

Chapter by Jörg Raab et al: “The core question addressed is to what extent ex ante knowledge can be made available from a network governance perspective to deal with a crisis such as an infectious disease outbreak. Such outbreaks are often characterized by a lack of information and knowledge, changing and unforeseen conditions as well as a myriad of organizations becoming involved on the one hand but also organizations which do not become adequately involved. We introduce the organizational network governance approach as an exploratory approach to produce useful ex ante information for limiting the transmission of a virus and its impact. We illustrate the usefulness of our approach introducing two fictitious but realistic outbreak scenarios: the West Nile Virus (WNV), which is transmitted via mosquitos and the outbreak of a New Asian Coronavirus (NAC) which is characterized by human to human transmission. Both viruses can lead to serious illnesses or even death as well as large health care and economic costs.

Our organizational network governance approach turns out to be effective in generating information to produce recommendations for strengthening the organizational context in order to limit the transmission of a virus and its impact. We also suggest how the organizational network governance approach could be further developed…(More)”.

Personal privacy matters during a pandemic — but less than it might at other times

Curated on Posted on by Stefaan Verhulst

Nicole Wetsman at the Verge: “…The balance between protecting individual privacy and collecting information that is critical to the public good changes over the course of a disease’s spread. The amount of data public health officials need to collect and disclose changes as well. Right now, the COVID-19 pandemic is accelerating, and there is still a lot doctors and scientists don’t know about the disease. Collecting detailed health information is, therefore, more useful and important. That could change as the outbreak progresses, Lee says.

For example, as the virus starts to circulate in the community, it might not be as important to know exactly where a sick person has been. If the virus is everywhere already, that information won’t have as much additional benefit to the community. “It depends a lot on the maturity of an epidemic,” she says.

Digital tracking information is ubiquitous today, and that can make data collection easier. In Singapore, where there’s extensive surveillance, publicly available data details where people with confirmed cases of COVID-19 are and have been. The Iranian government built an app for people to check their symptoms that also included a geo-tracking feature. When deciding to use those types of tools, Lee says, the same public health principles should still apply.

“Should a public health official know where a person has gone, should that be public information — it’s not different. It’s a lot easier to do that now, but it doesn’t make it any more right or less right,” she says. “Tracking where people go and who they interact with is something public health officials have been doing for centuries. It’s just easier with digital information.”

In addition, just because personal information about a person and their health is important to a public health official, it doesn’t mean that information is important for the general public. It’s why, despite questioning from reporters, public health officials only gave out a limited amount of information on the people who had the first few cases of COVID-19 in the US…

Health officials worry about the stigmatization of individuals or communities affected by diseases, which is why they aim to disclose only necessary information to the public. Anti-Asian racism in the US and other countries around the world spiked with the outbreak because the novel coronavirus originated in China. People who were on cruise ships with positive cases reported fielding angry phone calls from strangers when they returned home, and residents of New Rochelle, New York, which is the first containment zone in the US, said that they’re worried about their hometown being forever associated with the virus.

“This kind of group-level harm is concerning,” Lee says. “That’s why we worry about group identity privacy, as well. I’m nervous and sad to see that starting to poke its head out.”

People can’t expect the same level of personal health privacy during public health emergencies involving infectious diseases as they can in other elements of their health. But the actions public health officials can take, like collecting information, aren’t designed to limit privacy, Fairchild says. “It’s to protect the broader population. The principle we embrace is the principle of reciprocity. We recognize that our liberty is limited, but we are doing that for others.”…(More)”.

Coronavirus: seven ways collective intelligence is tackling the pandemic

Curated on Posted on by Stefaan Verhulst

Article by Kathy Peach: “Tackling the emergence of a new global pandemic is a complex task. But collective intelligence is now being used around the world by communities and governments to respond.

At its simplest, collective intelligence is the enhanced capacity created when distributed groups of people work together, often with the help of technology, to mobilise more information, ideas and insights to solve a problem.

Advances in digital technologies have transformed what can be achieved through collective intelligence in recent years – connecting more of us, augmenting human intelligence with machine intelligence, and helping us to generate new insights from novel sources of data. It is particularly suited to addressing fast-evolving, complex global problems such as disease outbreaks.

Here are seven ways it is tackling the coronavirus pandemic:

1. Predicting and modelling outbreaks

On the December 31, 2019, health monitoring platform Blue Dot alerted its clients to the outbreak of a flu-like virus in Wuhan, China – nine days before the World Health Organization (WHO) released a statement about it. It then correctly predicted that the virus would jump from Wuhan to Bangkok, Seoul, Taipei and Tokyo.

Blue Dot combines existing data sets to create new insights. Natural language processing, the AI methods that understand and translate human-generated text, and machine learning techniques that learn from large volumes of data, sift through reports of disease outbreaks in animals, news reports in 65 languages, and airline passenger information. It supplements the machine-generated model with human intelligence, drawing on diverse expertise from epidemiologists to veterinarians and ecologists to ensure that its conclusions are valid.

2. Citizen science

The BBC carried out a citizen science project in 2018, which involved members of the public in generating new scientific data about how infections spread. People downloaded an app that monitored their GPS position every hour, and asked them to report who they had encountered or had contact with that day….(More).

Handwashing Can Stop a Virus—So Why Don’t We Do It?

Curated on Posted on by Stefaan Verhulst

Michael Hallsworth at Behavioral Scientist: “Why don’t we wash our hands as much as we should?

Behavioral science can help identify some of the key barriers. It may also suggest what might make a difference for COVID-19 in the absence of a vaccine, recognizing that there is much we still do not know about this virus.

The first barrier may be a lack of awareness about the effectiveness of soap, water, and scrubbing. People may simply not realize how well specific handwashing actions can prevent the spread of infectious disease. This is why many public health agencies run educational campaigns, which may have varying effects based on how far they take evidence about behavior into account.

For example, last weekend the Behavioural Insights Team (BIT), the organization for which I work, ran a set of online trials with 3,500 U.K. adults to test the impact of various posters on people’s intended handwashing behavior. We found that posters seemed to have stronger effects on people who were already washing their hands more frequently. In other words, the more compliant people got more compliant. Obviously, this is a real problem for infection control.

One specific issue with COVID-19 may be that people’s attention is being drawn to something else instead: face masks. In many countries, face masks in public are uncommon. Therefore, people in these places are more likely to notice when others are wearing masks, since doing so is visible and novel—unlike washing of hands! This may create the perception that wearing a face mask is the priority for preventing infection.

There are benefits from face masks, but we still lack evidence about how they are used or whether they work if worn by people who are not yet infected. At least one study suggests that on their own they may be less effective than handwashing at preventing transmission. And given that there’s a limited supply, face masks need to be reserved for the people and situations where they can do the most good.

Perhaps the main concern is that people may have a risk thermostat, whereby taking protective measures in one area means that they feel greater license to take risks in another. Obtaining a face mask may make people feel more protected and could mean they make less of an effort to wash their hands adequately.

Awareness is unlikely to be enough on its own. We also need to consider availability. In some instances, there are practical barriers to handwashing—water, soap, and drying materials may not be available. People may be aware of what they should do but be unable to follow through. One obvious solution is to increase the provision of alcohol-based hand sanitizer dispensers at locations where handwashing is infeasible. Doing this has been shown to improve hand hygiene on its own.

However, behavioral science shows that not all “availability” is equal: even small increases in required effort may result in a hand sanitizer going unused. Therefore, those providing hand sanitizer should also consider whether they’ve made usage as convenient as possible. How can dispensers be located so people do not have to make detours to use them? How can the dispensers be made more prominent—like the use of color? Where do people normally have to pause, thus making them more open to usage—like waiting for an elevator?…(More)”.