witt-epidemiology

emerging role of internet & social media in disease surveillance

Preciosa M. Coloma, MD, PhD

Information explosion and collaboration revolution

productivity

efficiency

creativity

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.

‘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.

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

‘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

‘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.

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

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

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

‘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.

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.

There’s more!

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

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

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

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’)

The bad part: some criticisms

Citizen science = Pseudoscience?

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

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

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.

Signs of the times

As we recognise the need for greater efficiency

and multidisciplinary collaboration in biomedical

research, can we learn from examples of

revolutionary Web-based approaches?

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

� “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

Thank you!