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Open in order to ensure healthy lives - OpenCon UN 2018

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

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Open in order to ensure healthy lives - OpenCon UN 2018

  1. 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. 2. Why is Open important to me?
  3. 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. 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. 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. 6. When we think about a resource as openly accessible, we have to think for whom it is accessible
  7. 7. Why does Open matter at the scale of diseases?
  8. 8. “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.
  9. 9. ●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
  10. 10. ● 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
  11. 11. What happens when Open wins the race?
  12. 12. The Human Genome Project
  13. 13. ● 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
  14. 14. 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/
  15. 15. 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/
  16. 16. 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
  17. 17. With Open as a foundation, progress happens faster and equality digs in.
  18. 18. 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.
  19. 19. 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
  20. 20. Thank you for your attention. Questions?

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