Ethical data collection and management in Healthcare

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Ethical data collection and management in Healthcare

The MyHealthRecord System (formally known at the Personally Controlled Electronic Health Record) is the Australian Government’s electronic health record system and is currently being driven by the Australian Digital Health Agency (ADHA). The system contains key personal health information, including test results, summaries of hospital attendance, allergies, etc. MyHealthRecord allows access to both the individual and any treating clinician, at any point of time, through an online portal.

There is a proposed change to the MyHealthRecord legislation, following a number of successful trials, to move to an opt-out model rather than the current opt-in approach, i.e. members of the public have to choose not to have a MyHealthRecord. Having all of the Australian population automatically receive a MyHealthRecord has great clinical benefit, as the treating clinician has greater access than ever before to a patient’s medical history across all clinical settings (i.e. GPs, Pathology providers, Radiology Providers, Community care, hospital care, etc.)

There are, however, a number of ethical issues that need to be reviewed, particularly if health researchers would like to use the data (in a de-identified format) collected by the MyHealthRecord system.

This website provides some further information:

https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/content/home

For the purpose of this assignment answer the following questions and points (within a 3,000 word limit):

1.     Provide a brief description and background of the MyHealthRecord in its current format.

2.     Identify and discuss the relevant privacy legislation (in Australia) that relates to the MyHealthRecord.   

3.     Identify and discuss three potential ethical issues related to the secondary data use of My Health Record data.

4.     If a health researcher wanted to access data from My Health Record that was identified, state 3 considerations that would need to be looked at before data was released.

5.     As a data manager name 3 measures you would use to ensure that de-identified data could not be re-identified at a later stage.

Try to use sources from the last five years, unless the topic relates to your discussion. Ensure that you apply correct citation and referencing standards.