Open in order to ensure healthy lives and promote well-being for all at all ages - OpenCon United Nations Headquarters 2018 slides - Natalia Norori CC BY 2018

1. Open in order to ensure healthy
lives and promote well-being
for all at all ages
Natalia Norori - @natalianorori - natalia@openaccessbutton.org
Medical Student - Universidad Latina de Costa Rica
Request Manager – Open Access Button

2. Why is Open important to me?

3. "I would love to access this article in order to
better treat my female patient with chronic low
back pain! I am a physical therapy student
looking for evidenced based treatment options! "
Source: User request stories, openaccessbutton.org

4. "For use as an aid in constructive and
educational dialogue/communication between
patients and their mental health practitioner."
Source: User request stories, openaccessbutton.org

5. "I am a medical student working at the
neurology department of the Reinier de Graaf
hospital in Delft. We have a patient with
extensive cerebral metastasis of his lung cancer
and we could really use this article in helping us
make an informed treatment decision."
Source: User request stories, openaccessbutton.org

6. When we think about a resource as openly accessible, we
have to think for whom it is accessible

7. Why does Open matter at the scale of
diseases?

9. “In the future medical personnel in Liberian
health centers should be aware of the possibility
that they may come across active cases and
thus be prepared to avoid nosocomial
epidemics."
J.Knobloch, E.J.Albiez, H.Schmitz (1982). A serological survey on viral haemorrhagic fevers in liberia . Annals of Virology.

10. ●The paper costs $45 =
about 4 days of a liberian
doctor salary.
●The paper was published in
a paywalled european
journal.
●Liberians had no
participation in the study.
Average journal price in Health Sciences:
$2,021
=
2.4 years of preschool
7 months of utilities
4 months of salary
Sources: Library Journal 2018 periodical pricings survey , NUMBEO 2018 cost of living in Liberia

11. ● Easy access to the paper
● Better equipment
● Prevention of public health
outbreaks
● Ability to address diseases
before they become a problem
● Informed patients
● Creation of campaigns and
prevention strategies

12. What happens when Open wins
the race?

13. The Human Genome Project

14. ● Automatic release of sequence
assemblies in less than 1 day.
● Immediate submission of annotated
sequence.
● Aim to have all sequence freely
available for both research and
development, in order to maximize
the benefit to society.
● The funding agencies should foster
these policies.
Handwritten notes from the bermuda strategy meeting ,1996, courtesy
of Sanger Institute

15. Impact of the Human Genome Project
Between 1988 - 2012
$965 billionin economic output
$293 billionin personal
4 million jobs
30% moregenetic tests emerged from sequenced genes
Source: https://sparcopen.org/impact-story/human-genome-project/

16. Impact of the Human Genome Project
Between 1988 - 2012
Helped develop new diagnostic tools and technologies
capable of quickly identifying diseases
Facilitated scientific understanding of the role of genes
Helped understand linkage between genetic mutations and
diseases
Source: https://sparcopen.org/impact-story/human-genome-project/

17. Myriad Genetics BCRA1 and
BCRA2 testing cost
=
$4,000
In 2013 the company
performed over 1 billion tests
Cook-Deegan, R., & Niehaus, A. (2014). After Myriad: Genetic Testing in the Wake of Recent Supreme Court Decisions about Gene Patents.
Current Genetic Medicine Reports, 2(4), 223–241. http://doi.org/10.1007/s40142-014-0055-5

18. With Open as a foundation,
progress happens faster and
equality digs in.

19. Using Open to Enable Progress on
SDGs
● Upgrade the Research4Life program.
● Become leaders and teachers on Open practices as
librarians within the UN.
● Continue bringing other institutions with you by setting an
example, and leveraging funding policies.

20. Credits
● PHD Comics Open Access Week 2012 campaign
● James Balm, BioMed Central
● New York Times
● Peter Murray's blog
● U.S. Department of Energy Genomic Science program

21. Thank you for your attention.
Questions?