Public standards and patients' control: how to keep electronic medical records accessible but private Commentary: Open approaches to electronic patient records Commentary: A patient's viewpoint

Abstract

A patient's medical records are generally fragmented across multiple treatment sites, posing an obstacle to clinical care, research, and public health efforts. 1 Electronic medical records and the internet provide a technical infrastructure on which to build longitudinal medical records that can be integrated across sites of care.Choices about the structure and ownership of these records will have profound impact on the accessibility and privacy of patient information.Already, alarming trends are apparent as proprietary online medical record systems are developed and deployed.The technology promising to unify the currently disparate pieces of a patient's medical record may actually threaten the accessibility of the information and compromise patients' privacy. 2 In this article we propose two doctrines and six desirable characteristics to guide the development of online medical record systems.We describe how such systems could be developed and used clinically. Medical information: access and privacyNo single institution can hope to encompass a patient's entire record.Ideally, it should be possible to create or assemble each patient's personal health record so that it is accessible at all points of care within the health service and contains data from all institutions involved in that patient's care.Two main impediments stand in the way of this ideal.Firstly, most healthcare institutions do not provide effective access for patients to their own data and, despite technical feasibility, 3 they show little willingness to share data with their competitors.4 Secondly, patients are becoming increasingly anxious about the privacy of their medical records.5 Such concerns seem justified when one considers that, under current laws and practices, identifiable medical data are routinely shared with insurance companies, government, researchers, employers, state bureaus of vital statistics, pharmacy benefit managers (companies that track doctors' drug prescriptions), local retail pharmacies, attorneys, and others.6 Doctrines for developing electronic medical recordsWe propose two doctrines to guide the development of electronic medical records: firstly, that record systems should be designed so that they can exchange all their stored data according to public standards and, secondly, that patients should have control over access and permissions.Building software compliant with public standards will enable connectivity and interoperability-even of diverse systems.Patients' control will allow protection of privacy according to individual preferences and help prevent some of the current misuses of personal medical information.The purpose behind these doctrines is to ensure long term access of patients and care providers to medical records for clinical use while minimising the risk to patients' privacy. Public standardsSome of the stresses on the doctor-patient relationship could be eased by using computerised and internet based tools for decision support, communications, 7 8 and documentation. 1 As medical care increasingly depends on computerisation, software engineering and marketing practices become more relevant to issues of healthcare delivery and patients' rights.Unfortunately, many current systems fragment medical records by using incompatible means of acquiring, processing, storing, and communicating data.These incompatibilities may result from a failure to recognise the need for interoperability or they may be deliberate, with the aim of locking consumers into using a particular system.Either way, the practice precludes sharing of data across different applications and institutions.The alternative to proprietary methods is the use of open standards.At minimum, open standards should be used in the exchange of information among different systems.For example, HL7 (Health Level Seven) is a voluntary consensus standard for electronic data Summary pointsElectronic medical record systems should be designed so that they can exchange all their stored data according to public standards Giving patients control over permissions to view their record-as well as creation, collation, annotation, modification, dissemination, use, and deletion of the record-is key to ensuring patients' access to their own medical information while protecting their privacy Many existing electronic medical record systems fragment medical records by adopting incompatible means of acquiring, processing, storing, and communicating data Record systems should be able to accept data (historical, radiological, laboratory, etc) from multiple sources including physician's offices, hospital computer systems, laboratories, and patients' personal computers Consumers are managing bank accounts, investments, and purchases on line, and many turn to the web for gathering information about medical conditions; they will expect this level of control to be extended to online medical portfolios Information in practice