References

Our research process is based on the latest peer-reviewed publications.

Cited peer-reviewed publications

  1. IOM, Ensuring Quality Cancer Care, ed. N.C.P. Board. 1999, Washington, DC: National Academy Press.
  2. IOM, Enhancing Data Systems to Improve the Quality of Cancer Care, ed. N.C.P. Board. 2000, Washington, DC: National Academy Press.
  3. IOM, Crossing the Quality Chasm : A New Health System for the 21st Century. 2001, Washington, DC: National Academy Press.
  4. NIH, Methodology and Measurement in the Behavioral and Social Sciences (R21).
  5. IOM, Learning Healthcare System Concepts v. 2008. 2009, Washington, DC: National Academy Press.
  6. Fennema-Notestine, C., Enabling public data sharing: encouraging scientific discovery and education. Methods Mol Biol, 2009. 569: p. 25-32.
  7. de Carvalho, E., A. Batilana, J. Simkins, H. Martins, J. Shah, D. Rajgor, A. Shah, S. Rockart, and R. Pietrobon, Application description and policy model in collaborative environment for sharing of information on epidemiological and clinical research data sets. PLoS One, 2010. 5(2): p. e9314.
  8. Faden, R.R., T.L. Beauchamp, and N.E. Kass, Informed consent, comparative effectiveness, and learning health care. N Engl J Med, 2014. 370(8): p. 766-8.
  9. Oliver, J.M., M.J. Slashinski, T. Wang, P.A. Kelly, S.G. Hilsenbeck, and A.L. McGuire, Balancing the risks and benefits of genomic data sharing: genome research participants' perspectives. Public Health Genomics, 2011. 15(2): p. 106-14.
  10. Henderson, G.E., Is informed consent broken? Am J Med Sci, 2011. 342(4): p. 267-72.
  11. Lemke, A.A., W.A. Wolf, J. Hebert-Beirne, and M.E. Smith, Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics, 2010. 13(6): p. 368-77.
  12. Gillett, G. and S. Walker, The evolution of informed consent. J Law Med, 2012. 19(4): p. 673-7.
  13. Rathi, V., K. Dzara, C.P. Gross, I. Hrynaszkiewicz, S. Joffe, H.M. Krumholz, K.M. Strait, and J.S. Ross, Sharing of clinical trial data among trialists: a cross sectional survey. Bmj, 2012. 345: p. e7570.
  14. Nadler, J.J. and G.J. Downing, Liberating health data for clinical research applications. Sci Transl Med, 2010. 2(18): p. 18cm6.
  15. i2b2, Informatics for Integrating Biology and the Bedside. 2014, Partners HealthCare System.
  16. PEER, Platform for Engaging Everyone Responsibly. 2014, Genetic Alliance.
  17. Piwowar, H.A., M.J. Becich, H. Bilofsky, and R.S. Crowley, Towards a Data Sharing Culture: Recommendations for Leadership from Academic Health Centers. PLoS Med, 2008. 5(9): p. e183.
  18. Samson, K., Data sharing: making headway in a competitive research milieu. Ann Neurol, 2008. 64(1): p. A13-6.
  19. Brakewood, B. and R.A. Poldrack, The ethics of secondary data analysis: Considering the application of Belmont principles to the sharing of neuroimaging data. Neuroimage, 2013.
  20. Suominen, H., Towards an international electronic repository and virtual laboratory of open data and open-source software for telehealth research: comparison of international, Australian and finnish privacy policies. Stud Health Technol Inform, 2012. 182: p. 153-60.
  21. Lauer, M.S. and R.B. D'Agostino, Sr. The randomized registry trial--the next disruptive technology in clinical research? N Engl J Med, 2013. 369(17): p. 1579-81.
  22. Ness, R., Influence of the HIPAA privacy rule on health research. JAMA, 2007. 298: p. 2164-2170.
  23. IOM, Beyond the HIPAA privacy rule: Enhancing privacy, improving health through research. 2009.
  24. Jenkins, V., D. Farewell, L. Batt, T. Maughan, L. Branston, C. Langridge, L. Parlour, V. Farewell, and L. Fallowfield, The attitudes of 1066 patients with cancer towards participation in randomised clinical trials. Br J Cancer, 2010. 103(12): p. 1801-7.
  25. Weitzman, E.R., S. Kelemen, L. Kaci, and K.D. Mandl, Willingness to share personal health record data for care improvement and public health: a survey of experienced personal health record users. BMC Med Inform Decis Mak, 2012. 12: p. 39.
  26. Trinidad, S.B., S.M. Fullerton, J.M. Bares, G.P. Jarvik, E.B. Larson, and W. Burke, Informed Consent in Genome-Scale Research: What Do Prospective Participants Think? AJOB Prim Res, 2012. 3(3): p. 3-11.
  27. Westin, A., IOM project survey findings on health research and privacy. 2007.
  28. Burstein, M.D., J.O. Robinson, S.G. Hilsenbeck, A.L. McGuire, and C.C. Lau, Pediatric data sharing in genomic research: attitudes and preferences of parents. Pediatrics, 2014. 133(4): p. 690-7.
  29. Whitley, E.A., N. Kanellopoulou, and J. Kaye, Consent and research governance in biobanks: evidence from focus groups with medical researchers. Public Health Genomics, 2012. 15(5): p. 232-42.
  30. Townsend, A., Z. Amarsi, C.L. Backman, S.M. Cox, and L.C. Li, Communications between volunteers and health researchers during recruitment and informed consent: qualitative content analysis of email interactions. J Med Internet Res, 2011. 13(4): p. e84.
  31. Brehaut, J.C., D.A. Fergusson, J. Kimmelman, K.G. Shojania, R. Saginur, and G. Elwyn, Using decision aids may improve informed consent for research.
  32. Contemp Clin Trials, 2010. 31(3): p. 218-20.
  33. Beskow, L.M., J.Y. Friedman, N.C. Hardy, L. Lin, and K.P. Weinfurt, Simplifying informed consent for biorepositories: stakeholder perspectives. Genet Med, 2010. 12(9): p. 567-72.
  34. Fortune-Greeley, A.K., N.C. Hardy, L. Lin, J.Y. Friedman, J.S. Lawlor, L.H. Muhlbaier, M.A. Hall, K.A. Schulman, J. Sugarman, and K.P. Weinfurt, Patient reactions to confidentiality, liability, and financial aspects of informed consent in cardiology research. Circ Cardiovasc Qual Outcomes, 2010. 3(2): p. 151-8.
  35. Enama, M.E., Z. Hu, I. Gordon, P. Costner, J.E. Ledgerwood, and C. Grady, Randomization to standard and concise informed consent forms: development of evidence-based consent practices. Contemp Clin Trials, 2012. 33(5): p. 895-902.
  36. Kim, S.Y. and F.G. Miller, Informed consent for pragmatic trials--the integrated consent model. N Engl J Med, 2014. 370(8): p. 769-72.
  37. Greene, S., R. Reid, and E. Larson, Implementing the Learning Health System: From Concept to Action. Annals of Internal Medicine, 2012. 157.
  38. Corrigan, J., Crossing the Quality Chasm. 2001, Washington, DC: National Academy Press.
  39. Fitzpatrick, J., Lag Time in Research to Practice: Are We Reducing or Increasing the Gap? Applied Nursing Research, 2008. 1.
  40. Roberts, D., Improving care and practice through learning health systems. Nursing Management, 2013. 44: p. 19-22.