07.03.2013 Social media role epidemiology · ‘Democratizing the disease-hunting process’ Social...
Transcript of 07.03.2013 Social media role epidemiology · ‘Democratizing the disease-hunting process’ Social...
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witt-epidemiology
emerging role of internet & social media in disease surveillance
Preciosa M. Coloma, MD, PhD
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Information explosion and collaboration revolution
productivity
efficiency
creativity
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Outbreak surveillance a la
� Day 0: 03 Feb 2011: Fundraiser at Playboy Mansion, DOMAINFest
Global Conference, Los Angeles, California
Status update: Domainerflu count
Who else caught the disease at
D.F.G.?
� Day 2: 28-year old German entrepreneur woke up with chest pains,
chills and high fever; four colleagues shared his symptoms
� Day 3…: 24 conference attendees from around the world added
themselves to Facebook list
� Day 7: Number of people on list increased to 80; CDC officer
assigned to case joined FB list
‘Social Media Join Toolkit for Hunters of Disease.’ The New York Times. 13 June 2011.
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‘Democratizing the disease-hunting process’
�Social media are changing the way
epidemiologists discover and track
spread of disease.
� Before: guardians of public health swooped
onto scene of an outbreak armed with
diagnostic kits and a code of silence.
Officials spent weeks interviewing victims
privately, gathering test results and data,
rarely acknowledging in public that an
investigation was under way.
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A force to be reckoned with: just how BIG is it?
�500 M registered users,
340 million tweets per day
�500 M registered users,
625.000 join every day
�1 B active users, 1 M
integrated websites
�175 M registered users
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‘Wisdom from the crowds’
�Crowdsourcing is the act of outsourcing
tasks, traditionally performed by an employee, a company, or a
particular agency, to an outside group of people or community
(i.e. a ‘crowd’)
�Commonly used within business industries for marketing,
product design, and development
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‘Wisdom from the crowds’
�Crowdsourced health research studies have arisen as a natural
extension of the activities of health social networks (online health
interest communities)
� ‘Citizen science’
Online astronomy project
which invites people to assist in the
morphological classification of large
numbers of galaxies.
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Health 2.0 or Medicine 2.0
� ‘Participatory health’: Individuals use health social
networks, smartphone health applications, and personal
health records to achieve positive outcomes for a variety
of health conditions.
� Patients shift from mere passengers to responsible
drivers of their health, with providers considering them as
full partners
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Social networking for health
� Health social networks exemplify the predicted progression of
engagement in online communities, escalating in three stages from
information-sharing, to cooperating, to participating in collaborative
action.
� As of January 2012, some of the largest health social networks for
patients are:
� MedHelp (claiming over 12 million monthly visitors)
� PatientsLikeMe
� DailyStrength
� Tudiabetes
� CureTogether
� Asthmapolis
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Patient-organised clinical trials?
� PaientsLikeMe member with ALS found small Italian study where
lithium was found to slow disease progression (but which also
warned that model might not be applicable in other
circumstances)
� Convinced others to collaborate in study where patients would
apply Italian study to themselves
� 348 patients began off-label use of lithium, overseen by their MDs
� At end of study: self-reported data available for 149 patients on
lithium for ≥2 months , 78 patients on lithium for 12 months
� Lithium was found NOT to have positive impact in slowing disease
progression in ALS patients in subsequent studies
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‘Participatory epidemiology’
� HealthMap: website that tries to
pinpoint global outbreaks in real
time (http://healthmap.org)
� Scours the Web for disease
reports from local news articles,
witness accounts, blogs, Twitter,
official reports from CDC/WHO
and renders them as little red
pins on a map
� Related mobile app - Outbreaks Near Me: users rely on global
positioning to help them steer clear of infectious hazards; they
also can report new ones from their smartphones.
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Signorini A, Segre AM, Polgreen PM. The use of Twitter to track levels of disease activity and
public concern in the U.S. during the influenza A H1N1 pandemic. PLoS One. 2011 May
4;6(5):e19467. doi: 10.1371/journal.pone.0019467.
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There’s more!
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Health Social Networks and Drug Use
� off-label use (~21% of US prescriptions)
� amitriptyline (antidepressant) users with
ALS reported reduction in unwanted
excess saliva
�modafinil (wakefulness promoting drug)
users with MS and Parkinson’s disease
reported improvement in combating
general fatigue
� adverse effects/side effects
� tolerability
� patient attitudes and compliance
~ provide a new source of evidence about secondary uses for drugs and potentially identify targets for further study in RCTs
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Genome Association Studies
� 23andMe: largest personal genotyping
community, with as of June 2011
had over 100,000 genome service
subscribers (commercial)
� A handful of research studies have been published in peer-
reviewed journals (PLoS Genetics and PLoS One)
� Large case-control GWA study of Parkinson’s disease (3426
cases and 29,624 controls) � replicated 20 previously
discovered genetic associations and discovered 2 new ones
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Collaboration platforms
� Genomera: an eBay for health science experiments, where any
community member (professional researchers or ‘citizen scientists’)
may post a study in an area of interest and attempt to crowdsource
participants
� Althea Health: similar platform for the operation of crowdsourced
longitudinal health research studies
Check out video: http://youtu.be/V3HioMdBwmg
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Crowdsourced research: the good part
� Participant engagement
� Opportunity for more levels of openness/privacy
� participants decide what data to share with
whom
� individuals take responsibility for informing
themselves, possibly (hopefully!) in
consultation with physicians about self-
experimentation or study participation
�Direct rewards to study participants, health communities vs. study
funders in more traditional model
�Funding from alternative sources (e.g. patient advocacy groups,
research foundations, social venture capital, ‘crowdfunding’)
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The bad part: some criticisms
Citizen science = Pseudoscience?
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Pushing it too far?
� Butter Mind study: ‘randomized’ experiment
(n=45) found that eating 2 ounces butter/day
resulted in improved arithmetic speed
�no clear articulation of method, small sample size with limited
statistical power, did not control for IQ or education levels
� Blueberry Study: running since 1999 with hundreds of participants
investigating potential link between blueberry consumption and
enhanced mental performance
� In 2011, study organizers reported that a 1%
improvement in memory performance (measured by
online word recall exercises) within a 1-year period
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The bad part
� Methodological shortcomings
� self-reported, cannot be verified whether participant actually has the
condition, engaged in the intervention(s), and/or reported accurate
outcome data
??? Advocates point out that it would be time-consuming and without
ostensible benefit to participants to falsify data
� self-selection bias
� study designs may not strictly adhere to rigorous protocols to enable
costs to remain relatively low and increase feasibility of conducting
studies
� lack of regulation and oversight
� overstating of impact
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Promising or not?
� Crowdsourced research methodologies are novel –but does it
necessarily follow that they always beget novel discovery?
� They DO present avenues for replicating existing findings in larger
groups with more permutations.
� ‘Citizen science’ � potential to alter landscape of science in
important ways, harnessing countless able brains to do work once
the province of a few overwhelmed experts.
� Participatory health initiatives expand scope of medicine from a
traditional focus on disease cure to a personalized preventive
approach.
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Signs of the times
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As we recognise the need for greater efficiency
and multidisciplinary collaboration in biomedical
research, can we learn from examples of
revolutionary Web-based approaches?
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A force that cannot (and should not) be ignored
� Imprudent to ignore rapid advances in collaboration brought by
the Internet
�Capitalizing broadly on diverse areas of expertise can clearly
accelerate our efforts as knowledge workers
�Engage funders more fully and directly to promote greater
interest and contributions
�Crowdsourced health research can be a promising complement
and extension to traditional models for conduct of health
research
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� “Given that the next SARS probably can travel at the speed of
an airliner from continent to continent in a matter of hours, it just
makes perfect sense to adapt the speed and flexibility of social
networking to disease surveillance.’
-- Dr. Taha Kass-Hout, deputy director for information science at CDC
� Storehouses of new information can serve as important adjunct
to traditional disease surveillance, especially for new and
emerging diseases, or in instances where little or no historical
data exists
� BUT will need to define the rules of engagement.
A force that cannot (and should not) be ignored
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Thank you!