MSF & Open Data

Unni Karunakara

International President

Médecins Sans Frontières

that delivers emergency aid to people affected by armed conflict, epidemics, natural or man-made disasters or exclusion from healthcare.

An independent international medical humanitarian organisation

A doctor examines a child with diarrhoea at a refugee camp in Rakhine state, Myanmar, 2013.

All MSF members are committed to MSF’s Charter and its key principles

• Humanity – all people have equal value and dignity; right to receive and offer humanitarian assistance

• Impartiality – assistance non-discriminatory and provided solely based on need and proportional to needs and suffering

• Independence – assistance provided in a way that does not further a particular political or religious standpoint

• Neutrality – non-participation in conflicts, directly or indirectly• Medical Ethics – respect for autonomy; beneficence; non-

maleficence; justice

More than 400 humanitarian medical assistance programmes in 72 countries.

MSF responds where people cannot access healthcare:

in conflict, after natural disasters, during epidemics. 60% of our programmes are in unstable settings

Staff treat a patient following the earthquake in Haiti, 2010.

MSF speaks out

to challenge neglected acts of violence, the abuse of aid or the restriction of access to medical assistance.

In 2012, a slow response from humanitarian agencies meant Sudanese refugees in South Sudan could not access clean water.

Medical activities in 2012

8.3 million outpatient consultations

473,000 people admitted to hospital

79,000 surgical procedures

1.6 million treated for malaria

348,000 children treated for malnutrition

284,000 HIV patients received ARV treatment

185,000 births assisted

MSF is 32,000 field staff, supported by 2,000 staff at HQ and more than 4.5 million donors worldwide.

A surgical team work in a field hospital in Syria, 2013.

Humanitarian activities, 736.6

Fundraising, 110.9

Administration, 52.4

Public institutional,

75.2

Other, 18.7

Private, 791.6

90% of our funding comes from private sources, and the rest from public institutions including governments and UN agencies.

82% of our funding is spent on our humanitarian activities: on field operations, speaking out and advocacy.

2011 income and expenditure, in millions of euros

Research Units

• Epicentre | Paris• Manson Unit | London• LuxOR | Luxembourg• SAMU | Cape Town• BRAMU | Rio de Janeiro

• Centre de réflexion sur l'action et les savoirs humanitaires (CRASH) | Paris

Operational Research• scientific approach to finding

solutions or making better decisions for problems in the delivery of appropriate health care

– Lack of ethical and regulatory oversight– Paucity of resources such as HR &

facilities– Logistical challenges– Insecurity– Limited scientific exchange

Trends in MSF publications

1992 and earli

er

1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 20120

20

40

60

80

100

120

140

Number of MSF publications by year, as archived on the MSF field research website

year of publication

num

ber o

f pub

licati

ons

Total = 1,034

Trends in article accessibility

1992 and

earlier

1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 20120

10

20

30

40

50

60MSF publications, by journal access policy

open hybrid free after six months no free access other

num

ber

of a

rticl

es

Hybrid journals offer authors open access for a fee (similar to full OA journals, although often more expensive).

Trends in publication topic

2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 20120

5

10

15

20

25

30

35

40

Frequency of seven author keywords: MSF research publications 2000-2012

HIV (not TB)

tuberculosis (not HIV)

tuberculosis and HIV

mental health

nutrition

visceral leishmaniasis

malaria

Num

ber o

f pub

licati

ons

MSF 2012 publications by article type

Research61%

Short report, 4%

Review, 5%

Meta-analysis, 6%

Commentary24%

Access to 2012 publications

Full open access54%

No free access,

6%

Free af-ter 6

months, 5%

Other, 4%

Hybrid journals

31%

80 articles (54%) were published in exclusively OA journals.

Another 45 articles (31%) were in hybrid journals; authors chose OA (i.e. to pay an extra fee to make the article fully accessible) for only 5 of these 45 articles.

Journals in which MSF published most frequently in 2012

• PLoS One (25 articles) – open access• Public Health Action (13) – open access• Tropical Medicine & International Health (12) – hybrid• PLoS Neglected Tropical Diseases (7) – open access• International Journal of Tuberculosis and Lung Disease (7)

– free after 6 months

2012 publications by countryMSF publications incorporated data from 54 countries.

Annual Scientific Events

• La Journée Scientifique Epicentre, Paris (1991)

• MSF Scientific Day, London (2004)• OR Day, Brussels (2012)

MSF Scientific DayLondon

• Yearly event sharing MSF research• Streamed live online and on-demand for

3 months, free to access• In 2013 was watched in 92 countries by

1700 people with 1100 Twitter mentions of #MSFsci

• Sponsored by PLOS and Biomedcentral

Open research• MSF Field Research website

– www.fieldresearch.msf.org– all MSF publications archived online, free to

access, hosted on Biomedcentral platform– 30,000 downloads in 2012

• MSF research and ‘model’ protocols to be put online, free to access

• MSF has just launched an open access publication policy

Policy on Research Publication Access• Publishing is an integral part of MSF’s humanitarian mandate to not only

provide care but to document its implementation and advocate for policy change.

• Access to information about MSF programs should be freely available in line with its commitment to universal access to health care and essential drugs.

• MSF is supported mostly by private donations and donors should have access to its publications, to ensure transparency.

• Health workers, policy makers, researchers and government officials in developing countries have a fundamental right to access MSF’s experience

• MSF often conducts innovative programs in unique populations that test or extend existing health policies in field realities. The documentation of the results of these programs, either positive or negative, should be freely available to the scientific community

• In advocating for policy change, MSF needs to be able to cite credible evidence from peer reviewed journals regarding its experience

• As a medical humanitarian organisation, MSF needs to demonstrate its commitment to scientific documentation

Duty to share dataIs data sharing the morally sound default position?

• data ownership can be broadened to include the public that funds it

• As such, maximizing the social benefits of research is of great import

• the collaborative nature of contemporary science calls for the sharing of data

– Is There a Duty to Share? Ethics of Sharing Research Data in the Context of Public Health Emergencies. Pinky Langat Dmitri Pisartchik, Diego Silva, Carrie Bernard, Kolby Olsen, Maxwell Smith, Sachin Sahni and Ross Upshur. Public Health Ethics (2011)doi: 10.1093/phe/phr005

Open Data Policy• Ethical

– Medical confidentiality; Privacy; Collaborative partnerships• Equitable

– Balance needs of those who generate data with those expect benefits• Efficiency

– Improve quality and value; proportionate; reduce unnecessary duplication and competition

• Non-maleficence– Individual or community safety and interests not harmed

• Social benefit– Promote health benefits to larger population; benefit to communities

from which data collected prioritised• Open access

– Research to be used to increase access to those most need to benefit; no restrictive IP or excessive profit making

• Accountability– Facilitates independent verification and analysis; improves data

quality

To find out more:

www.msf.org

@Unni Karunakara