2103 Transnational Summit of Trustworthy Use of Data for Health

International Medical Informatics AssociationNongovernment Organization in Official Relations with WHO

Brussels, 3-4 June 2013

Data ColonialismNajeeb Al-ShorbajiWHO, June 2013

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, 1820-1910English nurse, writer and statistician

http://plus.maths.org/content/florence-nightingale-compassionate-statistician

From data to knowledge

Healthcare knowledge

Healthcare information

Healthcare data

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, 1999Howitt, et al 2012WHO global burden of disease: 2004

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

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

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;

Making value by processing

Gold in Guiana Gold in banks

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

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;

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

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

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.

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.

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.

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.

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?

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.

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;

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.

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

WHO global approaches to data sharing

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.

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.

Sharing of influenza monitoring dataThe 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.

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.

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/

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/

Thank you