Healthcare in the new age of transparency

Abstract

Similar to other areas of society, debates around access to and ownership of an individual's digital information have taken center stage in health care. A decade ago, the idea of offering patients ready access to their clinical notes was a fringe idea. Today, information transparency in health care has become a pressing legislative and regulatory issue in the United States and elsewhere. 1 The 21st Century Cures Act of 2016 requires that clinicians and health care organizations give patients electronic access to the information in their electronic medical records. Rules to enact this legislative priority promulgated by the Office of the National Coordinator for Health Information Technology and the Centers for Medicare and Medicaid have substantially expanded the types of information that must be easily accessible to patients and readily exchanged among clinicians in electronic form. 2 These regulations around information blocking, which take effect on November 2, 2020, require health care organizations and clinicians to share the following eight note types: consultation, discharge summary, history & physical, imaging, laboratory, and pathology report narratives, procedure notes, and progress notes. 3 By 2022, patients will be able to access this information in their records through any third party app of their choosing. The hope is that this increased transparency will improve care and the delivery system for patients, families, and clinicians; that it will positively impact patient safety; and that it will contribute to health care value for all stakeholders. Patients receiving dialysis are at particular risk for fragmented care, given the complexity of their needs and the number of clinical sites and providers involved in their treatment. 4 While the Centers for Medicare and Medicaid Services has incentivized coordination across dialysis stakeholders, it did does specifically target greater health information exchange between providers. 5 The current lack of interoperability between disparate EHRs prompted calls for increased investment in improved data exchange specifically for dialysis patients, similar to the work supported by CMS through the Promoting Interoperability programs in place for hospitals

Unsolicited Patient Complaints Following the 21st Century Cures Act Information-Blocking Rule

“…The concept of open notes has been widely implemented across the US and other countries for more than a decade and has been well studied and characterized . Survey data suggest that patients, particularly those receiving oncology care, have more trust and higher satisfaction with open notes . A recent survey study with respondents from 4 academic medical centers revealed that 96% of patients preferred immediate release of and access to online test results even if their health care practitioner had not yet reviewed them .…”

“… 21 Survey data suggest that patients, particularly those receiving oncology care, have more trust and higher satisfaction with open notes. 22 , 23 , 24 , 25 , 26 A recent survey study with respondents from 4 academic medical centers revealed that 96% of patients preferred immediate release of and access to online test results even if their health care practitioner had not yet reviewed them. 19 However, without adequately preparing patients and adjusting clinical systems, the increased messaging seen in the immediate release of electronic health information could increase the workload of clinicians and their clinical staff.…”

Ethical considerations in implementing AI for mortality prediction in the emergency department: Linking theory and practice

“…AI applications might thus lead to additional concerns about transparency in electronic health records. Nevertheless, most studies in recent years have been pro-transparency 60 – 63 in that patients own their medical information and thus have the right to access it. 60 Transparency enables patients to feel empowered and engaged in their care, improving patient satisfaction.…”

“…Nevertheless, most studies in recent years have been pro-transparency 60 – 63 in that patients own their medical information and thus have the right to access it. 60 Transparency enables patients to feel empowered and engaged in their care, improving patient satisfaction. 60 , 62 However, research also shows that governed individual real-time transparency that visualizes information from the electronic health record through the Open Notes service may have positive effects but can also result in negative trade-offs between transparency and efficiency of the actual practice.…”

“… 60 Transparency enables patients to feel empowered and engaged in their care, improving patient satisfaction. 60 , 62 However, research also shows that governed individual real-time transparency that visualizes information from the electronic health record through the Open Notes service may have positive effects but can also result in negative trade-offs between transparency and efficiency of the actual practice. 64 The consequences of transparency are most centered around consequentialism.…”