Electronic Communication of the Health Record and Information With Pediatric Patients and Their Guardians.

Communication of health data has evolved rapidly with the widespread adoption of electronic health records (EHRs) and communication technology. What used to be sent to patients via paper mail, fax, or e-mail may now be accessed by patients via their EHRs, and patients may also communicate securely with their medical team via certified technology. Although EHR technologies have great potential, their most effective applications and uses for communication between pediatric and adolescent patients, guardians, and medical teams has not been realized. There are wide variations in available technologies, guiding policies, and practices; some physicians and patients are successful in using certified tools but others are forced to limit their patients' access to e-health data and associated communication altogether. In general, pediatric and adolescent patients are less likely than adult patients to have electronic access and the ability to exchange health data. There are several reasons for these limitations, including inconsistent standards and recommendations regarding the recommended age for independent access, lack of routine EHR support for the ability to filter or proxy such access, and conflicting laws about patients' and physicians' rights to access EHRs and ability to communicate electronically. Effective, safe electronic exchange of health data requires active collaboration between physicians, patients, policy makers, and health information technology vendors. This policy statement addresses current best practices for these stakeholders and delineates the continued gaps and how to address them.

[Real-time access via the patient portal; is this desirable for good care provision?] / Realtime-inzage via het patiëntenportaal.

More and more hospitals are opening patient portals, which enable patients to view their medical records online. Some hospitals take it one step further and offer patients real-time access. The right to digital access to data, either locally or at a distance, will be established in the course of the next few years in new European General Data Protection Regulation and in the Netherlands 'law for supplementary conditions for processing personal data in the care sector' ('Wet aanvullende bepalingen verwerking persoonsgegevens in de zorg'). These developments give relevancy to the question whether real-time access to medical records is desirable for good care provision. There are pros and cons to real-time access. Many of the pros also apply when access is provided after a short buffer period and more research, particularly into potential damaging consequences, is desirable. When all aspects are taken into consideration, a system of real-time access can be in conflict with good care provision in certain situations, for instance, if it is not possible to set up a buffer period.

Legal, Practical, and Ethical Considerations for Making Online Patient Portals Accessible for All.

Largely driven by the financial incentives of the HITECH Act's Meaningful Use program as part of federal US health care reform, access to portal Web sites has rapidly expanded, allowing many patients to view their medical record information online. Despite this expansion, there is little attention paid to the accessibility of portals for more vulnerable patient populations-especially patients with limited health literacy or limited English proficiency, and individuals with disabilities. We argue that there are potential legal mandates for improving portal accessibility (e.g., the Civil Rights and the Rehabilitation Acts), as well as ethical considerations to prevent the exacerbation of existing health and health care disparities. To address these legal, practical, and ethical considerations, we present standards and broad recommendations that could greatly improve the reach and impact of portal Web sites.

Patient portals and young people: addressing the privacy dilemma of providing access to health information.

Patient portals enable people to access their health information electronically, but concerns about confidentiality and privacy breaches, particularly for young people, may be impeding portal adoption in New Zealand. This paper considers the legal and ethical framework relating to health information privacy and informed consent in New Zealand, and proposes an approach to implementing patient portals for young people. Shared portal access (where both a young person and their parent or guardian have access to the young person's portal) may be appropriate for young children whose parents or guardians are responsible for their health care. However, as children mature and their capacity to make health care decisions increases, general practitioners will need to consider shifting to independent portal access by competent young people. The circumstances of each young person, including their best interests and rights, cultural needs and their views on information disclosure should be taken into account.

Implications of Direct Patient Online Access to Radiology Reports Through Patient Web Portals.

In an era of increasing health information transparency and informed decision making, more patients are being provided with direct online access to their medical records, including radiology reports, via web-based portals. Although radiologists' narrative reports have previously been the purview of referring physicians, patients are now reading these on their own. Many potential benefits may result from patients reviewing their radiology reports, including improvements in patients' own understanding of their health, promotion of shared decision making and patient-physician communication, and, ultimately, improvements in patient outcomes. However, there may also be negative consequences, including confusion and anxiety among patients and longer patient-physician interactions. The rapid adoption of this new technology has led to major questions regarding ethics and professionalism for radiologists, including the following: Who is the intended audience of radiology reports? How should content be presented or worded? How will open access influence radiologists' relationships with patients and referring physicians? What legal ramifications may arise from increased patient access? The authors describe the current practices and research findings associated with patient online access to medical records, including radiology reports, and discuss several implications of this growing trend for the radiology profession.