A keynote address made at the 2013 Transnational Summit of Trustworthy use of Data for Health. It was a provocative speech as it compare the abuse of health data with the abuse of natural resources extracted from countries through manipulation of people without giving them back any of the benefits of the resources they give. Big data in health, unethical use of data and the need for better regulations and ethical principles.

1. 2103 Transnational
Summit of Trustworthy
Use of Data for Health
International Medical Informatics Association
Nongovernment Organization in Official Relations
with WHO
Brussels, 3-4 June 2013

2. Data Colonialism
Najeeb Al-Shorbaji
WHO, June 2013

3. Statistics as the word of God
"to understand God's thoughts, we must study
statistics (data) for these are the measure of His
purpose".
Florence Nightingale, 1820-1910
English nurse, writer and statistician
http://plus.maths.org/content/florence-nightingale-compassionate-statistician

4. From data to knowledge
Healthcare knowledge
Healthcare information
Healthcare data

5. Knowledge for health
• Advances in knowledge and technology have
contributed substantially to improvements in
health, but these gains have not been distributed
or shared equally, with disparities in life
expectancy and burden of disease especially
notable between low-income and middle-income
countries, and high-income countries.
World Health report, 1999
Howitt, et al 2012
WHO global burden of disease: 2004

6. Exploitation or what?
• The taste of the chocolate
mattered little to these
producers (of cocoa in
Africa). Most had never
bitten into a bar.
• They believed cocoa
possessed spiritual or even
magical qualities. Cocoa
became known as the Food
of the Gods.
Orla Ryan. Chocolate nations: living and
dying for cocoa in West Africa. Zed Books,
2011. p. 4

7. Exploitation or what?
• In order to launch a single drug a
company has to convince 4,000
patients to undergo 141 medical
procedures each in more than 65
separate trials. P 3. (CentreWatch)
• "Many subjects are not aware of
the procedure, or their rights, thus
reducing the risk of expensive
litigation".
Sonia Shah. The Body Hunters: Testing New Drugs on the
World's Poorest Patients. New Press, 2006

8. The analogy
Gold
• Gold prospecting is the act
of searching for new gold
deposits
• Gold mining. the process of
mining of gold or gold ores
from the ground
Data
• Data mining. Extracting
information from a data set
and transform it into an
understandable structure
for further use.
• Knowledge discovery.
Extracting useful knowledge
from data;

9. Making value by processing
Gold in Guiana Gold in banks

10. Democratization or colonialism?
• Wulff said "democratization of mobile broadband is
not about access to the internet but also what the
people can do with the internet. He urged Ugandans
to put as much content online as possible because the
more information is shared, the more it becomes
beneficial to the online community and the world".
Kai Uwe Wulff, the access development director at Google:
http://allafrica.com/stories/201211201744.html

11. Clinical trial data from LMICs
• Too many people, easy to recruit;
• Living in poverty and cheap or little payment;
• Little awareness even of the concept of informed
consent does not exist;
• Forced to collaborate with hope to solve some of
their health problems. Accept to experiment or
die;
• Greed and unethical practices, including not
sharing the data or publishing the results;
• Absence of legislation, rules or regulations
governing patients rights or use of their data;

12. Global Observatory for eHealth: Legal and ethical frameworks for eHealth.
http://www.who.int/goe/survey/2009/figures/en/index4.html
Absence of legislation to protect privacy

13. Absence of legislation on sharing health-related
data
Global Observatory for eHealth: Legal and ethical frameworks for eHealth.
http://www.who.int/goe/survey/2009/figures/en/index4.html

14. What is big data?
Big data has important and distinct qualities
that differentiate it from “traditional”
institutional data, in particular its timeliness.
• The size. Huge quantities. Volume.
• Multiple sources. Personal, institutional, environmental,
geographic, financial.
• Changing fast.
• Unstructured. which metadata scheme.
• Multiple format. Numbers, text, images.
• Multiple locations.
• Multiple ownership.

15. Big data in health
• Health has always been data intensive, analytics
dependent, multidisciplinary, and collaborative. The
social determinants of health is a manifestation of the
need for international collaboration.
• Diseases and climate change don't recognize borders.
• “Big Data” impose new challenges for health and
biomedical research, education and services impacted
by volume, diversity and rapid change, enabled or
disabled by governance, policies and technology.

16. International or global health
• globalization as “the process of increasing
economic, political, and social interdependence
and integration as capital, goods, persons,
concepts, images, ideas and values cross state
boundaries.” Yach and Bettche, 1998.
• Global health is the health of populations in a
global context and transcends the perspectives
and concerns of individual nations. Brown, Cueto,
and Elizabeth Fee, 2006.

17. Transnational data flow
• The movement of personally identifiable data from one
country to the other;
• The movement of information with socio-economic
and/or cultural value;
• The movement of "know-how" in the form of skills,
knowledge, information and data as the core of
technology transfer and sharing;
• Health is a global concern that is trans-border by
definition and affects the world population. Resolving
global health issues requires full participation of
individuals in a person-centred healthcare system where
ICT is central piece.

18. Global health driven by personal
data
• Personal communication systems such as the
mobile phone, personal health records on the
internet, email exchanges, postings on
discussion lists, social media, etc. have provided
the individuals with the opportunity to be an
active part of their healthcare delivery system
(care, services, surveillance and learning).
• What happens to such data?

19. Privacy and big data
• Social media and crowd sourcing are the major source
of big data. Facebook with 1.11 users from all countries
and territories of the world has more data on individual
more than any other one country;
• Users voluntarily provide personal and location data
assuming that others (friends or peers) will benefit from
it;
• Once data has been collected, individuals have
absolutely no control over who uses it or how it is used;
• Personal data collected through social media and other
personal health records has become of strategic
importance, even more important than precious metals.

20. Unethical (re)use
• This becomes critical if personal data collected in
one country for specific purposes is (re)used for
purposes other than the personal health and well
being of the individual in another country or third
party.
• More serious if data is deliberately and
unilaterally transmitted, without the authorities
consent, across borders for use by "foreign"
entities possibly against the interest or benefit of
the data owners;

21. Unethical (re)use
• Sources of such data could be:
–Social media;
–Health records;
–Clinical trials;
–Government records, civil registration,
social security files, academic records, etc.;
–Research data;
–International telemedicine services;
–Medical tourism;
–Pilot projects on mHealth and EMRs.

22. Global challenges to legal data
sharing
• Data fragmentation
• Lack of data standardization and
interoperability
• Lack of clarity on data ownership
• Closed computer systems
• Lack of legislative frameworks
• Lack of transparency

23. WHO global approaches to
data sharing

24. The International Health Regulations
• IHR are an international legal instrument that is
binding on 194 countries across the globe, aiming to
help the international community prevent and respond
to acute public health risks that have the potential to
cross borders and threaten people worldwide.
• Entered into force on 15 June 2007, require countries to
report certain disease outbreaks and public health
events to WHO;
• Define the rights and obligations of countries to report
public health events, and establish a number of
procedures that WHO must follow in its work to uphold
global public health security.

25. International Clinical Trials
Registry Platform
• The mission of the WHO International Clinical Trials
Registry Platform is to ensure that a complete view of
research is accessible to all those involved in health care
decision making. This will improve research transparency
and will ultimately strengthen the validity and value of the
scientific evidence base. http://www.who.int/ictrp/en/
• A study on the use of data from registered clinical trials to
identify gaps in health research and development found that
"there is little correlation between burden of disease and the
global distribution of clinical trial research and that
populations in lower-income countries receive much less
attention, in terms of clinical trial research, than populations
in high-income countries. Vierger, et al, 2013.

26. Sharing of influenza monitoring data
The open and transparent sharing of influenza monitoring
data by participating countries allows WHO to:
• provide countries, areas and territories with information
about influenza transmission in other parts of the world to
allow national policy makers to better prepare for upcoming
seasons;
• provide data for decision making regarding
recommendations for vaccination and treatment;
• describe critical features of influenza epidemiology
including risk groups, transmission characteristics, and
impact;
• monitor global trends in influenza transmission; and
• inform the selection of influenza strains for vaccine
production.

27. On novel coronavirus: Slow
Information Sharing
• Saudi Arabia complained at the WHO meeting
that there was a lag of three months, between
June and September 2012, "where we were not
aware of the discovery of the virus." The
WHO's DG responded by calling on Assembly
delegates to share specimens with WHO
collaborating centers, not in a bilateral
manner. "No IP will stand in the way of
public health actions," she said.

28. Global Health Observatory (GHO)
data repository
• The GHO data repository contains an
extensive list of indicators, which can be
selected by theme or through a multi-
dimension query functionality. It is the World
Health Organization's main health statistics
repository.
http://www.who.int/gho/database/en/

29. How to increase data sharing equitably
• Data sharing is important and is an opportunity for funders and researchers
to increase the impact of research for the improvement of health;
• Increased collaboration and consultation between funders and researchers is
needed to ensure all necessary aspects associated with the challenges and
opportunities of date sharing are discussed and jointly addressed;
• Funding should be included in research projects to develop the capacity to
do data analysis;
• The primary analysis of data collected in LMICs should be done by those
who collected it, and the secondary analysis be done by researchers in the
countries where the data was collected;
• Governments and research agencies in LMICs should contribute to the data
sharing dialogue and help establish enabling environments in LMICs
settings to ensure equitable access to data sharing and use of results from
research.
TDR: http://www.who.int/tdr/news/2011/data-sharing/en/

30. Thank you