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Sarah Malanga, "Big Data Neglects Populations Most in Need of Medical and Public Health Research and Interventions"


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Part of the "2016 Annual Conference: Big Data, Health Law, and Bioethics" held at Harvard Law School on May 6, 2016.

This conference aimed to: (1) identify the various ways in which law and ethics intersect with the use of big data in health care and health research, particularly in the United States; (2) understand the way U.S. law (and potentially other legal systems) currently promotes or stands as an obstacle to these potential uses; (3) determine what might be learned from the legal and ethical treatment of uses of big data in other sectors and countries; and (4) examine potential solutions (industry best practices, common law, legislative, executive, domestic and international) for better use of big data in health care and health research in the U.S.

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School 2016 annual conference was organized in collaboration with the Berkman Center for Internet & Society at Harvard University and the Health Ethics and Policy Lab, University of Zurich.

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Sarah Malanga, "Big Data Neglects Populations Most in Need of Medical and Public Health Research and Interventions"

  2. 2. Overview • Big Data • Uses in medicine • Gaps in collection of Big Data • Consequences • Recommendations
  3. 3. Source:
  4. 4. Source:
  5. 5. How is Big Data used in medicine? • Recruitment • Study design • Public health intervention design & implementation • Precision medicine • Prescription drug usage trends • Population genetics
  6. 6. Gaps in Data Collection Unfortunately, Big Data is not always inclusive… 20% 57% 19.9% 11.8% 9.3% 30%
  7. 7. BIG DATA SOURCE HOW IT’S USED GAPS IN COLLECTION Social Media ( i.e. Facebook, Twitter); Wearables (i.e., Apple Watch, FitBit); Internet Use Consumer trends, behavioral data, and biometrics Not everyone has access to social media, wearables, or the internet; not everyone chooses to engage with social media or use a wearable Electronic Health Records; Insurance Claims Gathering and analyzing data on a range of medical and healthcare issues – disease prevalence, diagnoses, prescription drug trends Certain hospitals/healthcare facilities may not use EMRs, therefore creating a dearth of information on certain demographics Genome Sequencing; Biospecimens; Research Participation Ability to collect and analyze genetic information Cost prohibitive; emphasis on collecting from certain populations
  8. 8. Consequences The exclusivity of big data is troublesome because of its potential ramifications in terms of national health.
  9. 9. Dearth of information Heightened risk of health disparity Lack of tailored health care Less benefits for certain populations
  10. 10. Recommendations Use Precision Medicine Initiative funding to increase grants focused on diverse populations Encourage the FDA to require that data from a diverse, inclusive pool Continuously update recommendations & guidelines Encourage new regulations to guarantee inclusive data The Precision Medicine Initiative provides $215 in funding to encourage investment and research into precision medicine FDA guidelines suggest mechanisms on how to collect racial and ethnic data Various agencies provide guidelines and recommendations to increase diversity Federal government is currently involved in the regulation of scientific endeavors
  11. 11. BIG DATA SOURCE WHAT’S CURRENTLY BEING DONE TO ADDRESS GAPS? RECOMMENDATION Social Media ( i.e. Facebook, Twitter); Wearables (i.e., Apple Watch, FitBit); Internet Use Lifeline was expanded in March 2016 to include broadband services, which will be available to low-income Americans. Expand Lifeline program to provide smartphones and mobile internet Electronic Health Records; Insurance Claims HITECH Initiative; Affordable Care Act; Medicaid expansion Utilize EHRs in a more diverse, representative manner – expand their use across the country, with focus on populations that are not currently receiving adequate representation Genome Sequencing; Biospecimens; Research Participation NIH policy; FDA guidelines FDA should make diversity guidelines mandatory and enforce data standards in the research it will in the approval process
  12. 12. Questions?
  13. 13. Thank you!