Publications

2024

McMurry AJ, Gottlieb D, Miller TA, Jones JR, Atreja A, Crago J, Desai PM, Dixon BE, Garber M, Ignatov V, Kirchner LA, Payne PRO, Saldanha AJ, Shankar PRV, Solad YV, Sprouse EA, Terry M, Wilcox AB, Mandl KD. Cumulus: a federated electronic health record-based learning system powered by Fast Healthcare Interoperability Resources and artificial intelligence. J Am Med Inform Assoc [Internet]. 2024 Jun 11; Available from: http://dx.doi.org/10.1093/jamia/ocae130 PMID: 38860521

Jones JR, Gottlieb D, McMurry AJ, Atreja A, Desai PM, Dixon BE, Payne PRO, Saldanha AJ, Shankar P, Solad Y, Wilcox AB, Ali MS, Kang E, Martin AM, Sprouse E, Taylor DE, Terry M, Ignatov V, SMART Cumulus Network, Mandl KD. Real world performance of the 21st Century Cures Act population-level application programming interface. J Am Med Inform Assoc [Internet]. 2024 Mar 6; Available from: http://dx.doi.org/10.1093/jamia/ocae040 PMID: 38447593

Mandl, K.D., Gottlieb, D. & Mandel, J.C. Integration of AI in healthcare requires an interoperable digital data ecosystem. Nat Med (2024). https://doi.org/10.1038/s41591-023-02783-w

Phelan, D., Gottlieb, D., Mandel, J.C., Ignatov, V., Jones, J., Marquard, B., Ellis, A., Mandl, K.D. Beyond compliance with the 21st Century Cures Act Rule: a patient controlled electronic health information export application programming interface. Journal of the American Medical Informatics Association, 2024;, ocae013, https://doi.org/10.1093/jamia/ocae013

2023

Mandl K.D., Gottlieb, D., Mandel, J.C. Sustaining Momentum In Digital Health Care Data Exchange Amidst Regulatory Changes. Health Affairs Forefront, September 8, 2023. DOI: 10.1377/forefront.20230831.920275

Wang L, Zipursky AR, Geva A, McMurry AJ, Mandl KD, Miller TA. A computable case definition for patients with SARS-CoV2 testing that occurred outside the hospital. JAMIA Open. 2023 Jul 5;6(3):ooad047. doi: 10.1093/jamiaopen/ooad047. PMID: 37425487; PMCID: PMC10322650.

Miller TA, McMurry AJ, Jones J, Gottlieb D, Mandl KD. The SMART Text2FHIR Pipeline. medRxiv [Preprint]. 2023 Mar 27:2023.03.21.23287499. doi: 10.1101/2023.03.21.23287499. PMID: 37034815; PMCID: PMC10081439

2022

Mandel J., Pollak J., Mandl K. The Patient Role in a Federal National-Scale Health Information Exchange. J Med Internet Res 2022;24(11):e41750. URL: https://www.jmir.org/2022/11/e41750. DOI: 10.2196/41750

Adler-Milstein J, Aggarwal N, Ahmed M, Castner J, Evans BJ, Gonzalez AA, James CA, Lin S, Mandl KD, Matheny ME, Sendak MP, Shachar C, Williams A. Meeting the Moment: Addressing Barriers and Facilitating Clinical Adoption of Artificial Intelligence in Medical Diagnosis. NAM Perspect. 2022 Sep 29;2022:10.31478/202209c. doi: 10.31478/202209c. PMID: 36713769; PMCID: PMC9875857.

Bitterman, D.S., McGraw, D., Mandl, K.D. How The Cures Act Information Blocking Rule Could Impact Research. Health Affairs Forefront, June 29, 2022. DOI: 10.1377/forefront.20220623.777837

2021

Gordon W.J., Gottlieb D., Kreda D., Mandel J.C., Mandl K.D., Kohane I.S. Patient-led data sharing for clinical bioinformatics research: USCDI and beyond. Journal of the American Medical Informatics Association, Volume 28, Issue 10, October 2021, Pages 2298–2300. https://doi.org/10.1093/jamia/ocab133

Mandl KD, Perakslis ED. HIPAA and the Leak of “Deidentified” EHR Data. The New England Journal of Medicine. 2021 Jun 10;384(23):2171-2173. doi: 10.1056/NEJMp2102616. Epub 2021 Jun 5. PMID: 34110112.

Jones, J., Gottlieb, D., Mandel, J.C., Ignatov, V., Ellis, A., Kubick, W., Mandl, K.D. A landscape survey of planned SMART/HL7 bulk FHIR data access API implementations and tools, Journal of the American Medical Informatics Association, 2021;, ocab028, https://doi.org/10.1093/jamia/ocab028

McGraw, D., Mandl, K.D. Privacy protections to encourage use of health-relevant digital data in a learning health system. npj Digit. Med. 4, 2 (2021). https://doi.org/10.1038/s41746-020-00362-8

Sayeed, R., Jones, J., Gottlieb, D., Mandel, J.C., Mandl, K.D. A proposal for shoring up Federal Trade Commission protections for electronic health record–connected consumer apps under 21st Century Cures. Journal of the American Medical Informatics Association, ocaa227, https://doi.org/10.1093/jamia/ocaa227

2020

Gordon W.J., Mandl K.D. The 21st Century Cures Act: A Competitive Apps Market and the Risk of Innovation Blocking. J Med Internet Res 2020;22(12):e24824 URL: https://www.jmir.org/2020/12/e24824 DOI: 10.2196/24824 PMID: 33306034

Mandl, K.D., Gottlieb, D., Mandel, J.C. et al. Push Button Population Health: The SMART/HL7 FHIR Bulk Data Access Application Programming Interface. npj Digit. Med. 3, 151 (2020). https://doi.org/10.1038/s41746-020-00358-4

Liu D, Sahu R, Ignatov V, Gottlieb D, Mandl KD. High Performance Computing on Flat FHIR Files Created with the New SMART/HL7 Bulk Data Access Standard. AMIA Annu Symp Proc. 2020 Mar 4;2019:592-596. PMID: 32308853; PMCID: PMC7153160.

Kenneth D. Mandl, M.D., M.P.H., Isaac S. Kohane, M.D., Ph.D. Data Citizenship under the 21st Century Cures Act. The New England Journal of Medicine. Published online 11 March 2020. (doi: 10.1056/NEJMp1917640)

Sayeed, R., Gottlieb, D. & Mandl, K.D, 2020, SMART Markers: collecting patient-generated health data as a standardized property of health information technology. npj Digit. Med. 3, 9 (2020). https://doi.org/10.1038/s41746-020-0218-6

2019

Meeting to Advance Push Button Population Health: SMART/HL7 Bulk Data Export/FLAT FHIR. November 2019. ©2019 Health Level Seven International and Boston Children’s Hospital. Created by BullsEye Resources.

Kenneth D. Mandl, Isaac S. Kohane, 2019, Data standards may be wonky, but they will transform health care. STAT News. Available online 3 October, 2019.

Mandl KD, Gottlieb D, Mandel J, 2019, Patient Controlled Health Data: Balancing Regulated Protections with Patient Autonomy. The Health Care Blog. Available online 3 September 2019.

Mandl KD, Gottlieb D, Ellis A, 2019, Beyond One-Off Integrations: A Commercial, Substitutable, Reusable, Standards-Based, Electronic Health Record–Connected App. J Med Internet Res 2019;21(2):e12902. DOI: 10.2196/jmir.12902

< 2019

Mandl KD, Gottlieb D, Mandel J, 2018, Ensuring that the 21st Century Cures Act Health IT Provisions Promotes Interoperability and Data Exchange. The Health Care Blog. Available online 16 October 2018.

Balsari S, Fortenko A, Blaya JA, Gropper A, Jayaram M, Matthan R, Sahasranam R, Shankar M, Sarbadhikari SN, Bierer BE, Mandl KD, Mehendale S, Khanna T, 2018, Reimagining Health Data Exchange: An Application Programming Interface–Enabled Roadmap for India. J Med Internet Res 2018;20(7):e10725. DOI: 10.2196/10725

Chaballout B H, Shaw R J, Reuter-Rice K, 2017, The SMART healthcare solution. Advances in Precision Medicine, vol.2(1): 213. http://dx.doi.org/10.18063/APM.v2i1.213

Wagholikar KB, Jain R, Oliveira E, et al. Evolving Research Data Sharing Networks to Clinical App Sharing Networks. AMIA Summits on Translational Science Proceedings. 2017;2017:302-307.

Kenneth D. Mandl, M.D., M.P.H., Isaac S. Kohane, M.D., Ph.D. A 21st-Century Health IT System — Creating a Real-World Information Economy. The New England Journal of Medicine. Published online 18 May 2017. (doi: 10.1056/NEJMp1700235)

Perlin, J.B., Baker, D.B., Brailer, D.J., Fridma, D.B., Frisse, M.E., Halamka, J.D., Levi, J., Mandl, K.D., Marchibroda, J.M., Platt, R., Tang, P.C. Information Technology Interoperability and Use for Better Care and Evidence. Vital Directions for Health and Health Care Series. Discussion Paper, National Academy of Medicine, Washington, DC. September 19, 2016.

Improving Cancer-Related Outcomes with Connected Health:
A Report to the President of the United States from the President’s Cancer Panel. Bethesda (MD): President’s Cancer Panel; 2016.

Wagholikar KB, Mandel JC, Klann JG, Wattanasin N, Mendis M, Chute CG, Mandl KD, Murphy SN. SMART-on-FHIR implemented over i2b2 Journal of the American Medical Informatics Association. Available online 6 June 2016. (doi: http://dx.doi.org/10.1093/jamia/ocw079.)

Mandel JC, Kreda DA, Mandl KD, Kohane IS, Ramoni RB. SMART on FHIR: a standards-based, interoperable apps platform for electronic health records. Journal of the American Medical Informatics Association. Available online 17 February 2016. (doi: 10.1093/jamia/ocv189 .)

Mandl KD, Mandel JC, Kohane IS. Driving Innovation in Health Systems through an Apps-Based Information Economy. Cell Systems. Available online 11 June 2015. (doi: 10.1016/j.cels.2015.05.001.)

Mandl KD, Kohane IS. Federalist principles for healthcare data networks. Nature Biotechnology 33, 360–363 (2015). doi: 10.1038/nbt.3180

Alterovitz G, et al. SMART on FHIR Genomics: Facilitating standardized clinico-genomic apps. J Am Med Inform Assoc 2015;0:1–6. doi: 10.1093/jamia/ocv045, Brief Communication.

Mandl KD. Ebola in the United States: EHRs as a Public Health Tool at the Point of Care. JAMA. Published online October 20, 2014. (doi: 10.1001/jama.2014.15064.)

Sunyaev A, Dehling T, Taylor PL, Mandl KD. Availability and quality of mobile health app privacy policies. J Am Med Inform Assoc. Published Online First: 21 August 2014 (doi: 10.1136/amiajnl-2013-002605).

D’Amore JD, Mandel JC, Kreda DA, et al. Are Meaningful Use Stage 2 certified EHRs ready for interoperability? Findings from the SMART C-CDA Collaborative. J Am Med Inform Assoc. Published Online First: doi: 10.1136/amiajnl-2014-002883

Klann JG, McCoy AB, Wright A, Wattanasin N, Sittig DF, Murphy SN. Health Care Transformation Through Collaboration on Open-Source Informatics Projects: Integrating a Medical Applications Platform, Research Data Repository, and Patient Summarization. Interact J Med Res 2013;2(1):e11 (doi: 10.2196/ijmr.2454).

Kohane, I. S., and Mandl, K. D. Escaping the EHR Trap — The Future of Health IT [PDF]. N Engl J Med 2012 Jun 14;366(24):2240-2.

Mandl KD, Mandel JC, Murphy SN, Bernstam EV, Ramoni RL, Kreda DA, McCoy JM, Adida B, Kohane IS. The SMART Platform: early experience enabling substitutable applications for electronic health records [PDF]. J Am Med Inform Assoc. 2012 Jul-Aug;19(4):597-603. (doi: 10.1136/amiajnl-2011-000622)

Murphy, S. N., Weber, G., Mendis, M., Gainer, V., Chueh, H. C., Churchill, S., and Kohane, I. Serving the enterprise and beyond with informatics for integrating biology and the bedside (i2b2). J Am Med Inform Assoc 2010;17:124-30

Weitzman E.R., Kaci, L., and D., Mandl K. Sharing Medical Data for Health Research: The Early Personal Health Record Experience. J Med Internet Res 2010;e14

Weber, G. M., Murphy, S. N., McMurry, A. J., Macfadden, D., Nigrin, D. J., Churchill, S., and Kohane, I. S. The Shared Health Research Information Network (SHRINE): a prototype federated query tool for clinical data repositories. J Am Med Inform Assoc 2009;624-30

Weitzman, E. R., Kaci, L., and Mandl, K. D. Acceptability of a personally controlled health record in a community-based setting: implications for policy and design. J Med Internet Res 2009;e14

Mandl KD, Christensen C, Chueh H, Frisse M, Kibbe D, Kohane IS. Ten Principles for Fostering Development of an “iPhone-like” Platform for Healthcare Information Technology

Kohane IS. Substitutability: Why, What and How? [PDF] Oct 5, 2009

Adida B. Open and Safe HIT Platforms [PDF] Sep 21, 2009

Mandl KD, Kohane IS. No small change for the health information economy. N Engl J Med. 2009 Mar 26;360(13):1278-81

Mandl, K. D. and Kohane, I. S. Tectonic shifts in the health information economy. N Engl J Med 2008;1732-7

Halamka, J. D., Mandl, K. D., and Tang, P. C. Early experiences with personal health records. J Am Med Inform Assoc 2008;1-7

Bourgeois, F. T., Simons, W. W., Olson, K., Brownstein, J. S., and Mandl, K. D. Evaluation of influenza prevention in the workplace using a personally controlled health record: randomized controlled trial. J Med Internet Res 2008;e5

Bourgeois, F. C., Taylor, P. L., Emans, S. J., Nigrin, D. J., and Mandl, K. D. Whose personal control? Creating private, personally controlled health records for pediatric and adolescent patients. J Am Med Inform Assoc 2008;737-43

McMurry, A. J., Gilbert, C. A., Reis, B. Y., Chueh, H. C., Kohane, I. S., and Mandl, K. D. A self-scaling, distributed information architecture for public health, research, and clinical care. J Am Med Inform Assoc 2007;527-33

Kohane, I. S., Mandl, K. D., Taylor, P. L., Holm, I. A., Nigrin, D. J., and Kunkel, L. M. Medicine. Reestablishing the researcher-patient compact. Science 2007;836-7

Mandl, K. D., Simons, W. W., Crawford, W. C., and Abbett, J. M. Indivo: a personally controlled health record for health information exchange and communication. BMC Med Inform Decis Mak 2007;25

Adida, B. and Kohane, I. S. GenePING: secure, scalable management of personal genomic data. BMC Genomics 2006;93

Simons, W. W., Mandl, K. D., and Kohane, I. S. The PING personally controlled electronic medical record system: technical architecture. J Am Med Inform Assoc 2005;47-54

Sax, U., Kohane, I., and Mandl, K. D. Wireless technology infrastructures for authentication of patients: PKI that rings. J Am Med Inform Assoc 2005;263-8

Kohane, I. S. and Altman, R. B. Health-information altruists—a potentially critical resource. N Engl J Med 2005;2074-7

Mandl, K. D., Szolovits, P., and Kohane, I. S. Public standards and patients’ control: how to keep electronic medical records accessible but private. BMJ 2001;283-7

Riva, A., Mandl, K. D., Oh, D. H., Nigrin, D. J., Butte, A., Szolovits, P., and Kohane, I. S. The personal internetworked notary and guardian. Int J Med Inform 2001;27-40

Peter Szolovits, Jon Doyle, William J. Long, Isaac Kohane, Stephen G. Pauker. Guardian Angel: Patient-Centered Health Information Systems. Technical Report MIT/LCS/TR-604, Massachusetts Institute of Technology Laboratory for Computer Science, 1994.
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