REFERENCES

Bailin, P. 2019. Executive summary: Evolution of health data regulation. Medium. https://medium.com/datavant/executive-summary-evolution-of-health-data-regulation-faa5fbb4dc3c (accessed January 17, 2020).

Bell, S. K., M. Gerard, A. Fossa, T. Delbanco, P. H. Folcarelli, K. E. Sands, B. S. Lee, and J. Walker. 2017. A patient feedback reporting tool for OpenNotes: Implications for patient-clinician safety and quality partnerships. BMJ Quality and Safety 26(4):312–322. https://doi.org/10.1136/bmjqs-2016-006020.

Bierer, B. E., R. Li, M. Barnes, and I. Sim. 2016. A global, neutral platform for sharing trial data. New England Journal of Medicine 374(25):2411–2413. https://doi.org/10.1056/NEJMp1605348.

BlueCross BlueShield of North Carolina. 2019. Blue Cross NC and Five Major Health Systems Announce Unprecedented Move to Value-Based Care. http://mediacenter.bcbsnc.com/news/blue-cross-nc-and-five-major-health-systems-announce-unprecedented-move-to-value-based-care (accessed January 17, 2020).

Blumenthal, D. 2017. Data withholding in the age of digital health. The Milbank Quarterly 95(1):15–18. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5339379 (accessed January 14, 2020).

Blumenthal, D., D. Brailer, K. DeSalvo, R. Kolodner, F. Mostashari, and V. Washington. 2019. Former national health IT coordinators respond to proposed ONC, CMS interoperability rules. HealthAffairs Blog. https://www.healthaffairs.org/do/10.1377/hblog20190604.428654/full (accessed January 17, 2020).

Bourgeois, F. C., A. Fossa, M. Gerard, M. E. Davis, Y. J. Taylor, C. D. Connor, T. Vaden, A. McWilliams, M. D. Spencer, P. Folcarelli, and S. K. Bell. 2019. A patient and family reporting system for perceived ambulatory note mistakes: Experience at 3 US healthcare centers. Journal of the American Medical Informatics Association 26(12):1566–1573. https://doi.org/10.1093/jamia/ocz142.

Boyd, A. D., C. Hosner, D. A. Hunscher, B. D. Athey, D. J. Clauw, and L. A. Green. 2007. An “Honest Broker” mechanism to maintain privacy for patient care and academic medical research. International Journal of Medical Informatics 76(5–6):407–411. https://doi.org/10.1016/j.ijmedinf.2006.09.004.

BRCA Exchange. 2020. BRCA Exchange: Facts & Stats. https://brcaexchange.org/factsheet (accessed January 14, 2020).

Broad Institute. 2020. Count Me In. https://www.broadinstitute.org/count-me-in (accessed January 14, 2020).

Califf, R. M., M. A. Robb, A. B. Bindman, J. P. Briggs, F. S. Collins, P. H. Conway, T. S. Coster, F. E. Cunningham, N. De Lew, K. B. DeSalvo, C. Dymek, V. J. Dzau, R. L. Fleurence, R. G. Frank, M. Gaziano, P. Kaufmann,

M. Lauer, P. W. Marks, J. M. McGinnis, C. Richards, J. V. Selby, D. J. Shulkin, J. Shuren, A. M. Slavitt, S. R. Smith, B. V. Washington, P. J. White, J. Woodcock, J. Woodson, and R. E. Sherman. 2016. Transforming evidence generation to support health and health care decisions. New England Journal of Medicine 375:2395–2400. https://doi.org/10.1056/NEJMsb1610128.

CancerBase. 2020. CancerBase: Share, Discover & Change. https://cancerbase.org (accessed January 14, 2020).

Carequality. 2019. What Is Carequality? https://carequality.org/what-we-do (accessed January 17, 2020).

CARIN Alliance. 2019. The CARIN Alliance Code of Conduct. https://www.carinalliance.com/our-work/trust-framework-and-code-of-conduct (accessed April 30, 2020).

Cassel, C., and A. Bindman. 2019. Risk, benefit, and fairness in a big data world. JAMA 322(2):105–106. https://doi.org/10.1001/jama.2019.9523.

Castle-Clarke, S., and C. Imison. 2016. The digital patient: Transforming primary care. London: Nuffield Trust.

CDC (Centers for Disease Control and Prevention). 2019. Health Communication Basics. https://www.cdc.gov/healthcommunication/healthbasics/index.html (accessed October 7, 2020).

Center for Open Science. 2020. Homepage. https://cos.io (accessed January 14, 2020).

Chernew, M. E., R. E. Mechanic, B. E. Landon, and D. G. Safran. 2011. Private-payer innovation in Massachusetts: The “alternative quality contract.” Health Affairs 30(1):51–61. https://doi.org/10.1377/hlthaff.2010.0980.

CMS (Centers for Medicare & Medicaid Services). 2019a. Speech: Remarks by Administrator Seema Verma at the Blue Button Developer Conference. https://www.cms.gov/newsroom/press-releases/speech-remarks-administrator-seema-verma-blue-button-developer-conference (accessed April 30, 2020).

CMS. 2019b. Primary Care First Model Options. https://innovation.cms.gov/innovation-models/primary-care-first-model-options (accessed April 30, 2020).

CMS. 2020. Medicare and Medicaid Programs; Patient Protection and Affordable Care Act; Interoperability and Patient Access for Medicare Advantage Organization and Medicaid Managed Care Plans, State Medicaid Agencies, CHIP Agencies and CHIP Managed Care Entities, Issuers of Qualified Health Plans on the Federally-Facilitated Exchanges, and Health Care Providers. https://www.cms.gov/files/document/cms-9115-f.pdf (accessed July 8, 2020).

Cohen, D. J., S. R. Keller, G. R. Hayes, D. A. Dorr, J. S. Ash, and D. F. Sittig. 2016. Integrating patient-generated health data into clinical care settings or

clinical decision-making: Lessons learned from Project HealthDesign. JMIR Human Factors 3(2):e26. https://doi.org/10.2196/humanfactors.5919.

Count Me In. 2020. Count Me In Homepage. https://joincountmein.org/projects (accessed January 14, 2020).

CSER (Clinical Sequencing Evidence-Generating Research) Consortium. 2020. Clinical Sequencing Evidence-Generating Research. https://cser-consortium.org (accessed January 17, 2020).

Curtis, L. H., J. Brown, and R. Platt. 2014. Four health data networks illustrate the potential for a shared national multipurpose big-data network. Health Affairs 33(7):1178–1186. https://doi.org/10.1377/hlthaff.2014.0121.

de Sousa, H. R., and A. Pinto. 2019. Blockchain based informed consent with reputation support. In Blockchain and Applications, edited by J. Prieto, A. K. Das, S. Ferretti, A. Pinto, and J. M. Corchado. Basel, Switzerland: Springer Nature Switzerland. Pp. 54–61.

Deloitte. 2018. EHR Convergence and Interoperability: A Key Strategic Question for Health Care Providers. https://www2.deloitte.com/content/dam/Deloitte/us/Documents/life-sciences-health-care/us-lshc-ehr-convergence-and-interoperability.pdf (accessed January 17, 2020).

Dhir, R., A. A. Patel, S. Winters, M. Bisceglia, D. Swanson, R. Aamodt, and M. J. Becich. 2008. A multidisciplinary approach to honest broker services for tissue banks and clinical data: A pragmatic and practical model. Cancer 13(7):1705–1715. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2745185 (accessed January 14, 2020).

Dobscha, S. K., L. M. Denneson, L. E. Jacobson, H. B. Williams, R. Cromer, and S. Woods. 2016. VA mental health clinician experiences and attitudes toward OpenNotes. General Hospital Psychiatry 38:89–93. https://doi.org/10.1016/j.genhosppsych.2015.08.001.

Dove, E. S. 2015. Biobanks, data sharing, and the drive for a global privacy governance framework. Journal of Law, Medicine & Ethics 43(4):675–689. https://doi.org/10.1111/jlme.12311.

Dullabh, P. M., N. K. Sondheimer, E. Katsh, and M. A. Evans. 2014. How patients can improve the accuracy of their medical records. eGEMs 2(3):10. https://doi.org/10.13063/2327-9214.1080.

Emam, K. E., S. Rodgers, and B. Malin. 2015. Anonymising and sharing individual patient data. British Medical Journal 350:h1139. https://doi.org/10.1136/bmj.h1139.

Equal Employment Opportunity Commission. 2008. The Genetic Information Nondiscrimination Act of 2008. https://www.eeoc.gov/laws/statutes/gina.cfm (accessed January 16, 2020).

EU (European Union). 2020. Data Protection in the EU. https://ec.europa.eu/info/law/law-topic/data-protection/data-protection-eu_en (accessed September 16, 2020).

Farber, N. J., L. Liu, Y. Chen, A. Calvitti, R. L. Street, Jr., D. Zuest, K. Bell, M. Gabuzda, B. Gray, S. Ashfaq, and A. Agha. 2015. EHR use and patient satisfaction: What we learned. Journal of Family Practice 64(11):687–696. https://mdedge-files-live.s3.us-east-2.amazonaws.com/files/s3fs-public/issues/articles/JFP_06411_Article3.pdf (accessed July 8, 2020).

FDA (Food and Drug Administration). 2018. FDA’s Sentinel Initiative. https://www.fda.gov/safety/fdas-sentinel-initiative (accessed January 17, 2020).

FTC (Federal Trade Commission). 2019. FTC Submits Comment on Proposed Information Blocking Rule to the Department of Health & Human Services Office of the National Coordinator for Health Information Technology (ONC). https://www.ftc.gov/news-events/press-releases/2019/06/ftc-submits-comment-proposed-information-blocking-rule-department (accessed January 17, 2020).

Geisinger. 2018. Geisinger and Merck unveil new applications developed to help improve patient communication and care delivery. Geisinger News Releases. https://www.geisinger.org/about-geisinger/news-and-media/news-releases/2018/08/16/21/10/geisinger-merck-unveil-new-applications-to-help-improve-patient-communication-and (accessed April 30, 2020).

Genes, N., S. Violante, C. Centrangol, L. Rogers, E. E. Schadt, and Y. Y. Chan. 2018. From smartphone to EHR: A case report on integrating patient-generated health data. NPJ Digital Medicine 1:23. https://doi.org/10.1038/s41746-018-0030-8.

Glasgow, R. E., S. Finlayson, and D. M. Ray. 2018. To enlist physicians in reducing costs, show them the costs. Harvard Business Review, May 3. https://hbr.org/2018/05/to-enlist-physicians-in-reducing-costs-show-them-the-costs (accessed January 17, 2020).

Gleason, M., and E. Dave. 2020. Patient/caregiver letter supporting proposed HHS rules on improving flow of our data. Society for Participatory Medicine, January 26. https://participatorymedicine.org/epatients/2020/01/patient-caregiver-letter-supporting-proposed-onc-rule-on-improving-flow-of-our-data.html (accessed June 10, 2020).

Goldstein, M. M., and A. L. Rein. 2010. Data Segmentation in Electronic Health Information Exchange: Policy Considerations and Analysis. https://www.healthit.gov/sites/default/files/privacy-security/gwu-data-segmentation-final-cover-letter.pdf (accessed January 17, 2020).

Gordon, W., A. Chopra, and A. Landman. 2018. Patient-led data sharing—A new paradigm for electronic health data. NEJM Catalyst. https://catalyst.nejm.org/patient-led-health-data-paradigm (accessed August 6, 2019).

Harvard Medical School. 2020. Harvard Personal Genome Project. https://pgp.med.harvard.edu (accessed January 14, 2020).

Haug, C. J. 2017. Whose data are they anyway? Can a patient perspective advance the data-sharing debate? New England Journal of Medicine 376(23):2203–2205. https://doi.org/10.1056/NEJMp1704485.

HealthIT.gov. 2018. Legal and Ethical Architecture for Patient-Centered Outcomes Research (PCOR) Data (“Architecture”). https://www.healthit.gov/topic/scientific-initiatives/pcor/legal-and-ethical-architecture-patient-centered-outcomes-research-pcor-data-architecture (accessed July 7, 2020).

Hixson, J. D., D. Barnes, K. Parko, T. Durgin, S. Van Bebber, A. Graham, and P. Wicks. 2015. Patients optimizing epilepsy management via an online community: The POEM Study. Neurology 85(2):129–136. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4515038 (accessed January 14, 2020).

Holmgren, A. J., V. Patel, and J. Adler-Milstein. 2017. Progress in interoperability: Measuring US hospitals’ engagement in sharing patient data. Health Affairs 36(10):1820–1827. https://doi.org/10.1377/hlthaff.2017.0546.

Hrynaszkiewicz, I., and D. G. Altman. 2009. Towards agreement on best practice for publishing raw clinical trial data. Trials 10:17. https://doi.org/10.1186/1745-6215-10-17.

IDC (International Data Corporation). 2014. The Digital Universe of Opportunities: Rich Data and the Increasing Value of the Internet of Things. https://www.emc.com/leadership/digital-universe/2014iview/digital-universe-of-opportunities-vernon-turner.htm (accessed January 14, 2020).

IOM (Institute of Medicine). 2013. Digital data improvement priorities for continuous learning in health and health care: Workshop summary. Washington, DC: The National Academies Press. https://doi.org/10.17226/13424.

Irizarry, T., A. DeVito Dabbs, and C. R. Curran. 2015. Patient portals and patient engagement: A state of the science review. Journal of Medical Internet Research 17(6):e148. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4526960 (accessed January 14, 2020).

Jim, H. S., A. I. Hoogland, N. C. Brownstein, A. Barata, A. P. Dicker, H. Knoop, B. D. Gonzalez, R. Perkins, D. Rollison, S. M. Gilbert, and R. Nanda. 2020. Innovations in research and clinical care using patient-generated health data. CA: A Cancer Journal for Clinicians. https://doi.org/10.3322/caac.21608.

Kamo, N., B. L. Williams, and C. C. Blackmore. 2019. Evaluation of the association of public reporting of patient ratings of US primary care providers

with inappropriate care. Journal of General Internal Medicine 34(3):336–337. https://doi.org/10.1007/s11606-018-4706-1.

Kent, J. 2018. 74% of execs say interoperability is critical for value-based care. Health IT Analytics. https://healthitanalytics.com/news/74-of-execs-say-interoperability-is-critical-for-value-based-care (accessed April 30, 2020).

Kim, K. K., and M. Helfand. 2018. Engagement in PCORnet research networks. Medical Care 56:S1–S3. https://doi.org/10.1097/MLR.0000000000000958.

Kirwan, J. R., M. de Wit, L. Frank, K. L. Haywood, S. Salek, S. Brace-McDonnell, A. Lyddiatt, S. P. Barbic, J. Alonso, F. Guillemin, and S. J. Bartlett. 2017. Emerging guidelines for patient engagement in research. Value Health 20(3):481–486. https://doi.org/10.1016/j.jval.2016.10.003.

Klasnja, P., A. Civan Hartzler, K. T. Unruh, and W. Pratt. 2010. Blowing in the wind: Unanchored patient information work during cancer care. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. https://doi.org/10.1145/1753326.1753355.

Knoppers, B. M., J. R. Harris, A. M. Tasse, I. Budin-Ljosne, J. Kaye, M. Deschenes, and M. H. Zawati. 2011. Towards a data sharing code of conduct for international genomic research. Genomic Medicine 3(7):46. https://doi.org/10.1186/gm262.

Kravitz, D., and M. Allen. 2018. Your medical devices are not keeping your health data to themselves. Pro Publica. https://www.propublica.org/article/your-medical-devices-are-not-keeping-your-health-data-to-themselves (accessed January 14, 2020).

Kreimer, S. 2015. Avoiding an EHR-related malpractice suit. Medical Economics 92(20):66–69. https://pubmed.ncbi.nlm.nih.gov/26619632 (accessed July 8, 2020).

Kroth, P. J., N. Morioka-Douglas, S. Veres, K. Pollock, S. Babbott, S. Poplau, K. Corrigan, and M. Linzer. 2018. The electronic elephant in the room: Physicians and the electronic health record. JAMIA Open 1(1):49–56. https://doi.org/10.1093/jamiaopen/ooy016.

Kuntz, R. E., E. M. Antman, R. M. Califf, J. R. Ingelfinger, H. M. Krumholz, A. Ommaya, E. D. Peterson, J. S. Ross, J. Waldstreicher, S. V. Wang, D. A. Zarin, D. M. Whicher, S. M. Siddiqi, and M. H. Lopez. 2019. Individual patient-level data sharing for continuous learning: A strategy for trial data sharing. NAM Perspectives. Discussion Paper, National Academy of Medicine, Washington, DC. https://doi.org/10.31478/201906b.

Landi, H. 2019. ECRI: Top patient safety risks include inaccurate EHRs, clinician burnout. FierceHealthcare. https://www.fiercehealthcare.com/tech/

ecri-cites-ehr-use-clinician-burnout-mobile-health-as-top-patient-safetyrisks (accessed April 30, 2020).

Lavallee, D. C., J. R. Lee, E. Austin, R. Bloch, S. O. Lawrence, D. McCall, S. A. Munson, M. B. Nery-Hurwit, and D. Amtmann. 2020. mHealth and patient generated data: Stakeholder perspectives on opportunities and barriers for transforming healthcare. mHealth 6(8). https://doi.org/10.21037/mhealth.2019.09.17.

Lee, T. H., and T. Cosgrove. 2014. Engaging doctors in the healthcare revolution. Harvard Business Review. https://hbr.org/2014/06/engaging-doctors-in-the-health-care-revolution (accessed January 17, 2020).

Lye, C. T., H. P. Forman, R. Gao, J. G. Daniel, A. L. Hsiao, M. K. Mann, D. deBronkart, H. O. Campos, and H. M. Krumholz. 2018. Assessment of US hospital compliance with regulations for patients’ requests for medical records. JAMA Network Open 1(6):e183014. https://doi.org/10.1001/jamanetworkopen.2018.3014.

Mafi, J. N., M. Gerard, H. Chimowitz, M. Anselmo, T. Delbanco, and J. Walker. 2018. Patients contributing to their doctors’ notes: Insights from expert interviews. Annals of Internal Medicine 168(4):302–305. https://doi.org/10.7326/m17-0583.

Marshall, A. 2018. You snooze, you lose: Insurers make the old adage literally true. ProPublica. https://www.propublica.org/article/you-snooze-you-lose-insurers-make-the-old-adage-literally-true (accessed January 14, 2020).

Miliard, M. 2020. ONC, CMS give some breathing room for interop rules during COVID-19. Healthcare IT News. https://www.healthcareitnews.com/news/onc-cms-give-some-breathing-room-interop-rules-during-covid-19 (accessed April 30, 2020).

Na, L., C. Yang, C. C. Lo, F. Zhao, Y. Fukuoka, and A. Aswani. 2018. Feasibility of reidentifying individuals in large national physical activity data sets from which protected health information has been removed with the use of machine learning. Journal of the American Medical Association Network Open 1(8):e186040. https://doi.org/10.1001/jamanetworkopen.2018.6040.

NAM (National Academy of Medicine). 2015. The learning health system series. https://nam.edu/wp-content/uploads/2015/07/LearningHealthSystem_28jul15.pdf (accessed January 27, 2020).

NCATS (National Center for Advancing Translational Sciences). 2020. Clinical and Translational Science Awards (CTSA) Program. https://ncats.nih.gov/ctsa (accessed April 30, 2020).

Nelson, B. 2019. Taking the lead: A new breed for patient advocate is reshaping the future of cancer research. Cancer Health. https://www.cancerhealth.com/article/taking-lead-patient-advocacy (accessed January 14, 2020).

The New York Times Editorial Board. 2016. Protecting employee’s health data. The New York Times, March 26. https://www.nytimes.com/2016/03/27/opinion/sunday/protecting-employees-health-data.html (accessed January 14, 2020).

NGA (National Governors Association). 2018. Getting the Right Information to the Right Health Care Providers at the Right Time: A Road Map for States to Improve Health Information Flow Between Providers. http://natlgovassoc.wpengine.com/wp-content/uploads/2018/07/1612HealthCareRightInformation.pdf (accessed July 7, 2020).

NIH (National Institutes of Health). 2006. National Conference on Alternative IRB Models: Optimizing Human Subject Protection—November 19–21, 2006. https://osp.od.nih.gov/wp-content/uploads/2013/08/irbconf06rpt.pdf (accessed January 14, 2020).

NIH. 2019. Precision Medicine Initiative: Privacy and Trust Principles. https://allofus.nih.gov/about/program-overview/precision-medicine-initiative-privacy-and-trust-principles (accessed January 17, 2020).

Nkoy, F. L., B. A. Fassl, V. L. Wilkins, J. Johnson, E. H. Unsicker, K. J. Koopmeiners, A. Jensen, M. Frazier, J. Gaddis, L. Malmgren, S. Williams, H. Oldroyd, T. Greene, X. Sheng, D. A. Uchida, C. G. Maloney, and B. L. Stone. 2019. Ambulatory management of childhood asthma using a novel self-management application. Pediatrics 143(6):e20181711. https://doi.org/10.1542/peds.2018-1711.

NYeC (New York eHealth Collaborative). 2019. Policy & Governance. https://www.nyehealth.org/shin-ny/policy-governance (accessed January 17, 2020).

Nyrop, K. A., A. M. Deal, K. E. Reeder-Hayes, S. S. Shachar, B. B. Reeve, E. Basch, S. K. Choi, J. T. Lee, W. A. Wood, C. K. Anders, L. A. Carey, E. C. Dees, T. A. Jolly, G. G. Kimmick, M. S. Karuturi, R. E. Reinbolt, J. C. Speca, and M. B. Muss. 2019. Patient-reported and clinician-reported chemotherapy-induced peripheral neuropathy in patients with early breast cancer: Current clinical practice. Cancer 125(17):2945–2954. https://doi.org/10.1002/cncr.32175.

ONC (The Office of the National Coordinator for Health Information Technology). 2015. What Is the eHealth Exchange? https://www.healthit.gov/faq/what-ehealth-exchange (accessed January 17, 2020).

ONC. 2018. What Are Patient-Generated Health Data? https://www.healthit.gov/topic/otherhot-topics/what-are-patient-generated-health-data (accessed October 7, 2020).

ONC. 2019. Trusted Exchange Framework and Common Agreement. https://www.healthit.gov/topic/interoperability/trusted-exchange-framework-and-common-agreement (accessed January 17, 2020).

ONC. 2020a. The U.S. Core Data for Interoperability: Laying the Foundation for Broader Data Sharing to Support Patient Care. https://www.healthit.gov/sites/default/files/nprm/ONCCuresNPRMUSCDI.pdf (accessed January 17, 2020).

ONC. 2020b. Seven Exceptions to the Information Blocking Provision. https://www.healthit.gov/sites/default/files/nprm/ONCCuresNPRMInfoBlocking.pdf (accessed January 17, 2020).

ONC. 2020c. 21st Century Cures Act: Interoperability, Information Blocking, and the ONC Health IT Certification Program. https://www.federalregister.gov/documents/2020/05/01/2020-07419/21st-century-cures-act-interoperability-information-blocking-and-the-onc-health-it-certification (accessed April 30, 2020).

Paasche-Orlow, M. K., D. M. Jacob, and J. N. Powell. 2005. Notices of privacy practices: A survey of the Health Insurance Portability and Accountability Act of 1996 documents presented to patients at US hospitals. Medical Care 43(6):558–564. https://doi.org/10.1097/01.mlr.0000163646.90393.e4.

Palabindala, V., A. Pamarthy, and N. R. Jonnalagadda. 2016. Adoption of electronic health records and barriers. Journal of Community Hospital Internal Medicine Perspectives 6(5):32643. https://doi.org/10.3402/jchimp.v6.32643.

Parasidis, E., E. Pike, and D. McGraw. 2019. A Belmont Report for health data. New England Journal of Medicine 380(16):1493–1495. https://doi.org/10.1056/NEJMp1816373.

PCORnet^® (National Patient-Centered Clinical Research Network). 2013. The National Patient-Centered Clinical Research Network. https://pcornet.org (accessed July 8, 2020).

The Pew Charitable Trusts. 2020. Pew Urges HHS Secretary to Implement Health IT Rules to Help in Light of Coronavirus. https://www.pewtrusts.org/en/research-and-analysis/speeches-and-testimony/2020/04/02/pew-urges-hhs-secretary-to-implement-health-it-rules-to-help-in-light-of-coronavirus (accessed June 10, 2020).

Pierce, H. H., A. Dev, E. Statham, and B. E. Bierer. 2019. Credit data generators for data reuse. Nature 570(7759):30–32. https://doi.org/10.1038/d41586-019-01715-4.

Platt, R., and T. Lieu. 2018. Data enclaves for sharing information derived from clinical and administrative data. Journal of the American Medical Association 320(8):753–754. https://doi.org/10.1001/jama.2018.9342.

Quality Payment Program. 2020. MIPS Overview. https://qpp.cms.gov/mips/overview (accessed April 30, 2020).

Quinn, M. A., A. M. Kats, K. Kleinman, D. W. Bates, and S. R. Simon. 2012. The relationship between electronic health records and malpractice claims. Archives of Internal Medicine 172(15):1187–1189. https://doi.org/10.1001/archinternmed.2012.2371.

Raghupathi, W., and V. Raghupathi. 2014. Big data analytics in healthcare: Promise and potential. Health Information Science and Systems 2:3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4341817 (accessed January 14, 2020).

Ravindranath, M. 2019. How your health information is sold and turned into “risk scores.” Politico. https://www.politico.com/story/2019/02/03/health-risk-scores-opioid-abuse-1139978 (accessed January 14, 2020).

ResDAC (Research Data Assistance Center). 2018. Fee List for RIFs: Physical Research Data Request. https://www.resdac.org/sites/resdac.umn.edu/files/CMS%20Fee%20List%20for%20Research%20Files_4.pdf (accessed January 14, 2020).

ResDAC. 2020a. CMS Fee Information for CMS Research Identifiable Data. https://www.resdac.org/cms-fee-information-research-identifiable-data (accessed July 8, 2020).

ResDAC. 2020b. CMS Virtual Research Data Center (VRDC). https://www.resdac.org/cms-virtual-research-data-center-vrdc (accessed January 14, 2020).

Ridpath, J. R., C. J. Wiese, and S. M. Greene. 2009. Looking at research consent forms through a participant-centered lens: The PRISM Readability Toolkit. American Journal of Health Promotion 23(6):371–375. https://doi.org/10.4278/ajhp.080613-CIT-94.

Rocher, L., J. M. Hendrickx, and Y. A. de Montjoye. 2019. Estimating the success of re-identifications in incomplete datasets using generative models. Nature Communications 10(1):3069. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6650473.

Ross, J. S., J. Waldstreicher, S. Bamford, J. A. Berlin, K. Childers, N. R. Desai, G. Gamble, C. P. Gross, R. Kuntz, R. Lehman, P. Lins, S. A. Morris, J. D. Ritchie, and H. M. Krumholz. 2018. Overview and experience of the YODA Project with clinical trial data sharing after 5 years. Scientific Data 5:180268. https://doi.org/10.1038/sdata.2018.268.

Ryan, B. L., J. B. Brown, A. Terry, S. Cejic, M. Stewart, and A. Thind. 2016. Implementing and using a patient portal: A qualitative exploration of patient and provider perspectives on engaging patients. Journal of Innovation in Health Informatics 23(2):848. https://doi.org/10.14236/jhi.v23i2.848.

Savage, L. C. 2019. ONC’s proposed rule on information blocking: The potential to accelerate innovation in health care. HealthAffairs Blog. https://www.healthaffairs.org/do/10.1377/hblog20190215.3077/full (accessed January 17, 2020).

Schulte, F., and E. Fry. 2019. Death by 1,000 clicks: Where electronic health records went wrong. Kaiser Health News. https://khn.org/news/death-by-a-thousand-clicks (accessed January 14, 2020).

Sharfstein, J. M., D. Chrysler, J. Bernstein, L. Armijos, L. Tolosa-Leiva, H. Taylor, and L. Rutkow. 2017. Using electronic health data for community health: Example cases and legal analysis. https://www.debeaumont.org/wp-content/uploads/2019/04/Electronic-Health-Data-Report-1.pdf (accessed January 14, 2020).

Sim, I. 2019. Mobile devices and health. New England Journal of Medicine 381(10):956–968. https://doi.org/10.1056/NEJMra1806949.

Sittig, D. F., and H. Singh. 2011. Legal, ethical, and financial dilemmas in electronic health record adoption and use. Pediatrics 127(4):e1042–e1047. https://doi.org/10.1542/peds.2010-2184.

Stableford, S., and W. Mettger. 2007. Plain language: A strategic response to the health literacy challenge. Journal of Public Health Policy 28(1):71–93. https://doi.org/10.1057/palgrave.jphp.3200102.

Stanford Medicine. 2017. Stanford Medicine 2017 Health Trends Report: Harnessing the Power of Data in Health. https://med.stanford.edu/content/dam/sm/sm-news/documents/StanfordMedicineHealthTrendsWhitePaper2017.pdf (accessed January 14, 2020).

Stone, T. J., and D. Sullivan. 2007. Payer trend: “Tiering” physicians and “steering” patients. Family Practice Management 14(10):24–26. https://www.aafp.org/fpm/2007/1100/p24.html (accessed October 7, 2020).

Taha, J., S. J. Czaja, J. Sharit, and D. G. Morrow. 2013. Factors affecting usage of a personal health record (PHR) to manage health. Psychology and Aging 28(4):1124–1139. https://doi.org/10.1037/a0033911.

Tai-Seale, M., N. L. Downing, V. G. Jones, R. V. Milani, B. Zhao, B. Clay, C. D. Sharp, A. S. Chan, and C. A. Longhurst. 2019. Technology-enabled consumer engagement: Promising practices at four health care delivery organizations. Health Affairs 38(3):383–390. https://doi.org/10.1377/hlthaff.2018.05027.

Thielman, S. 2017. Your private medical data is for sale—and it’s driving a business worth billions. The Guardian. https://www.theguardian.com/technology/2017/jan/10/medical-data-multibillion-dollar-business-report-warns (accessed on July 25, 2019).

Toll, E. T., M. A. Alkureishi, W. W. Lee, S. F. Babbott, P. A. Bain, J. W. Beasley, R. M. Frankel, A. A. Loveys, H. S. Wald, S. S. Woods, and W. R. Hersh. 2019. Protecting healing relationships in the age of electronic health records: Report from an international conference. JAMIA Open 2(3):282–290. https://doi.org/10.1093/jamiaopen/ooz012.

Topol, E. 2016. The patient will see you now: The future of medicine is in your hands. New York: Basic Books.

U.S. Government. 2017. Federal policy for the protection of human subjects: Final rule. Federal Register 82(12):7149–7274. https://www.gpo.gov/fdsys/pkg/FR-2017-01-19/pdf/2017-01058.pdf (accessed July 8, 2020).

VA (Department of Veterans Affairs). 2018. Blue Button. https://www.va.gov/bluebutton (accessed April 30, 2020).

Valdez, R. S., R. J. Holden, L. L. Novak, and T. C. Veinot. 2015. Transforming consumer health informatics through a patient work framework: Connecting patients to context. Journal of the American Medical Informatics Association 22(1):2–10. https://doi.org/10.1136/amiajnl-2014-002826.

Vernon, J. A., A. Trujillo, S. Rosenbaum, and B. DeBuono. 2007. Low health literacy: Implications for national health policy. Health Policy and ManagementFacultyPublications. https://publichealth.gwu.edu/departments/healthpolicy/CHPR/downloads/LowHealthLiteracyReport10_4_07.pdf (accessed August 7, 2019).

Walker, J., S. Leveille, S. Bell, H. Chimowitz, Z. Dong, J. G. Elmore, L. Fernandez, A. Fossa, M. Gerard, P. Fitzgerald, K. Harcourt, S. Jackson, T. H. Payne, J. Perez, H. Shucard, R. Stametz, C. DesRoches, and T. Delbanco. 2019. OpenNotes after 7 years: Patient experiences with ongoing access to their clinician’s outpatient visit notes. Journal of Medical Internet Research 21(5):e13876. https://doi.org/10.2196/13876.

Wicks, P., and N. B. Fountain. 2012. Patient assessment of physician performance of epilepsy quality-of-care measures. Neurology: Clinical Practice 2(4):335–342. https://doi.org/10.1212/CPJ.0b013e318278beac.

Zulman, D. M., N. H. Shah, and A. Verghese. 2016. Evolutionary pressures on the electronic health record: Caring for complexity. JAMA 316(9):923–924. https://doi.org/10.1001/jama.2016.9538.

This page intentionally left blank.