Weapons and Hope

Independent Citizens Helping Health Agencies by Blogging?

On Wednesday, Michael E. Ruane of The Washington Post published an article entitled “Flu Trackers Encourage Patients to Blog About It,” describing public health agencies’ growing use of the internet social interactions to track flu outbreaks.  This has been made particularly relevant today as a result of H1N1 fears, but this type of internet monitoring (part of the rubric of “infodemiology”) has not popped up as a result of H1N1.  Ruane’s article is significant in that it is a small step towards popularizing the term “infodemiology” in mainstream consciousness, which could in the future present invaluable assistance to the public health and response system.

However, the infodemiology world could greatly benefit from a slight transformation: it should increasingly promote active citizen participation.

The Rise of Infodemiology

The term “infodemiology” was coined in a 2002 American Journal of Medicine editorial entitled “Infodemiology: The Epidemiology of (Mis)information” by Gunther Eysenbach, MD, a health policy professor at the University of Toronto.

In a later article, Eysenbach more lucidly explains infodemiology:

Dr. Gunther Eysenbach

Infodemiology can be defined as the science of distribution and determinants of information in an electronic medium, specifically the Internet, or in a population, with the ultimate aim to inform public health and public policy.

Potential infodemiology indicators and metrics include automatically aggregated and analyzed data on the prevalence and patterns of information on websites and social media; metrics on the “chatter” in discussion groups, blogs, and microblogs (eg, Twitter); and activities on search engines, etc.

…infodemiology is rooted in the idea that—at least for some areas and applications—there is a relationship between population health on one hand, and information and communication patterns in electronic media on the other, and if it were possible to develop robust metrics or “infodemiology indicators” which reflected these information and communication patterns in real-time, then all kinds of useful public health applications could be developed.

Eysenbach traces infodemiological studies back as far as 1996, but the term has yet to truly enter into mainstream consciousness.

Google’s Flu Trends and Boston-based HealthMap are two examples of current, public-access infodemiological systems.  Flu Trends monitors google search queries (locations and volume) with the assumption that there is a correlation between searches and experience of symptoms.  HealthMap crawls the internet looking for relevant epidemiological information, and consolidates that information into a real-time mapping interface.

Passive Participation

Most infodemiological techniques only involve citizens passively.  They certainly require alertness on the part of citizens, but do not necessarily solicit action on the part of citizens.  Instead, they monitor the public’s web presence looking for signs of increased interest in illness without most individuals actually being aware that this is happening at all.  The Washington Post article quotes Alessandro Vespignani, professor of informatics at Indiana University, explaining the concerns of this type of monitoring:

The Internet has been . . . a major scientific revolution… [With] all huge scientific revolutions there are enormous potential dangers. And confidentiality, privacy, is probably the first major issue at stake here.

Privacy is a contentious concern because of the status of citizens as unknowing (and by extension, perhaps unwilling) in regard to being monitored.

A Screenshot of HealthMap

There is a simple solution that would overcome the privacy problem while, even more importantly, greatly strengthen the efficacy of infodemiology: active and cognizant citizen involvement.  Instead of simply being the objects of monitoring, citizens can also become individual protagonists in helping a vast health network to confront and prepare for threatening epidemics.  As Ruane explains, some infodemiological programs already utilize active citizen help, such as Maryland’s “Resident Influenza Tracking Survey,” which requires citizen volunteers to fill out weekly surveys.  However, as August 2009, only 740 people had signed up in Maryland.

Greater efforts to bring responsible individual citizens actively into the contemporary challenges of infectious diseases will not only contribute to the public health battle against naturally occurring epidemics, but will also help to defend against potential bioterrorist attacks.  Infectious disease tracking is made quite complicated by unpredictable social interactions.  Real-time information provided to a consolidated infodemiological public health network would make tracking and preparedness much more reliable, and could thus save countless lives.  And in the case of a bioterrorist attack, rapid and real-time information would be even more critical to save lives and to maintain social stability.

The Preparedness Campaign

In Biosecurity Interventions: Global Health and Security in Question, sociology professor of UC Berkley Andrew Lakoff  discusses a transformation occurring within national security doctrine.  As Lakoff explains, in contrast to the traditional approach of dealing with preventable risks, U.S. government institutions now increasingly model risk management strategies around a postmodern, ambitious, and formalized agenda of preparing for (and thus mitigating) unavoidable risks.

These unavoidable risks come in two categories.  The first type of risk is man-made.  The power of modern science and technology—most archetypically represented by nuclear physics—has resulted in the simultaneous potential for remedial and destructive effects.  German sociologist Ulrich Beck has coined the term “manufactured risks” to refer to the unintended consequences of modern progress (Ulrich Beck, World Risk Society, 1999). The second type of risk is natural.  These risks, such as environmental disasters and natural disease epidemics, are beyond human control.  The threat of bioterrorism spans across both types of risk.

The agenda of preparedness has become as, if not more, important than the agenda of prevention.  Lakoff refers to this strategy as “vital systems security” and explains that

…this form of security is oriented to a distinctive type of threat: the event whose probability cannot be calculated, but whose consequences are potentially catastrophic. (Lakoff 2008: 403)

These threats cannot be effectively measured, and our means of knowing if and when they will transpire are exceptionally limited.  The justification for expending incredible amounts of time and money to establish preparedness against these risks lies in their “catastrophic” nature.

It is in this vein of preparedness that the Bush administration, in the wake of the September 11^th and consequent anthrax letter attacks, decided to bulk up its spending on biodefense.  On June 12, 2002 during a live televised address, President George W. Bush signed the Public Health Security and Bioterrorism Preparedness and Response Act of 2002 (the Bioterrorism Act), stating:

Bioterrorism is a real threat to our country. It’s a threat to every nation that loves freedom. Terrorist groups seek biological weapons; we know some rogue states already have them…It’s important that we confront these real threats to our country and prepare for future emergencies.

According to a 2008 article from The Washington Post, from 2002 to 2008, over $57 billion was spend on the U.S. biodefense program.  Most of this spending went to preparedness approaches, such as the production and stockpiling of vaccines and drugs (Project BioShield), the establishment of a network of detectors in more than 30 American cities (Project BioWatch), and training for mass infection and casualty response.

It has recently been contended that in contrast to the previous administration, the Obama administration plans to focus more greatly on prevention efforts.  Global Security Newswire reported on a recent White House bioterrorism meeting, in which the focus was on the prevention of biothreats rather than crisis management.

However, this does not mean that the importance of preparedness will be neglected.

Moreover, as evidenced by infodemiological programs, the preparedness culture seems to be spreading into a new realm: public awareness.  Preparedness does not need only include an expensive vaccine production industry, state-of-the-art biomonitoring equipment, and recondite hospital protocols.  Preparedness need not only originate in government programs and related industry.  The preparedness agenda can, perhaps most effectively, benefit from the most abundant and powerful source: individual citizens.

The Role of the Citizen

The most recent report by the Congressional Commission on the Prevention of WMD Proliferation and Terrorism, entitled World at Risk, emphasized the power of importance of citizen involvement:

A well-informed and mobilized citizenry has long been one of the United States’ greatest resources.  While much of this report has focused on what the U.S. government much do to prevent the use of weapons of mass destruction, it is also important to recognize the contribution that all Americans can make in preventing such an attack against our country. (pg. 108)

Although the report does not discuss infodemiology, its tone and recommendations for the “role of the citizen” is directly relevant to infodemiological potential.  The national (or even global) cyber-info community can help to overcome the effects of epidemics, whether naturally or nefariously caused.  Engaged online communities can help to defeat terrorism.  However, at this point, as explained above, infodemiological systems have not fully capitalized on the role of active, engaged citizens; instead, they have focused on the perhaps more convenient route of utilizing the public’s passive web presence.  Both types of engagement must be pursued.

But in order to get to the point where the public can better help the government defend against these types of hazards, many things need to happen to also help the public toward that end.  For example, there must be more public information published that explains the properties of specific threats, what constitutes suspicious activity, and how to inform authorities.  The public and government must more intimately engage each other in an information-sharing partnership.

But Beware of Misinformation and Disinformation

As indicated by the term, infodemiology demands information—real-time information.  This is its source of greatest strength, but also a troubling source of vulnerability.  In a study on the reliability of infodemiological practice for the American Medical Informatics Association, Eysenbach concluded:

Systematically collecting and analyzing health information demand data from the Internet has considerable potential to be used for syndromic surveillance. Tracking web searches on the Internet has the potential to predict population-based events relevant for public health purposes, such as real outbreaks, but may also be confounded by “epidemics of fear”.

Although Eysenbach has identified infodemiology as having “considerable potential,” he also notes that its efficacy can be greatly undermined by misinformation.  As described above, one type of misinformation would be the result of fear, which would confound the vision of infodemiological programs.

Another type of misinformation not covered by Eysenbach could come from intentional interference (disinformation).  Pranksters, hackers, and general rabble-rousers could exploit infodemiological systems as tools of disruption, purposefully inputting false information that would result in mis-diversion of public health resources and attention.

Ruane of The Washington Post quotes Ashley Fowlkes, an epidemiologist with the CDC, saying:

You’re always going to have to have [infodemiological results] verified against a system that’s physician-based.

Cross-referencing of different public health tools such as described by Fowlkes would certainly mitigate the dangers of infodemiological disinformation.  Nonetheless, as infodemiological systems become more powerful and involved, information-reliability safeguards of some sort may have to be built in.

Concluding Thoughts

Moving towards an infodemiological model that incorporates a more active citizenry (as opposed to the currently passive use of citizens) would have several benefits:

1. Infodemiological programs would produce a greater wealth of more reliable information;
2. Individual citizens would be exposed to the importance of responsible involvement in communally defending against infectious disease; and
3. As an extension, individual citizens would be introduced to their own potential in defending against terrorism

Although it is the official job of the government, the citizenry should also try to take more active role in protecting itself.  Through partnerships between citizens, the public health system, and the government, 21^st-century biological threats will be significantly mitigated.  And the lessons learned could be applicable to other types of threats as well.