Health data & information analysis

  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. ============================== End of assignment information * Some explanations and ideas while doing or researching for this assignment as follows: a review of the Library Database reveals many sources of data and information that can be used for this assignment, you can also draw parallels on other types of health databases that may be used. The potential use of health data from databases such as the MyHealth Record (formerly know as the Personally Controlled Health Record - PCEHR) is discussed quite extensively. You can also draw on general ethical issues raised in health. When looking at an assignment you need to break it down and look at some key words, the first question gets you to examine the MyHealth Record, what is the MyHealth Record? It is a personally controlled electronic health record that has information from a variety of clinical sources, so some key words here might be ‘Health Record’ ‘Personal Health Record’ ‘Patients own record’, etc. We have asked for you to review the ethical issues, so key words such as ‘ethics and use of personal health data’ ‘health data and privacy’ will bring up other sources of information and research. The area of health ethics addresses values guiding actions and decisions in healthcare, health research and health policy that may impact on patients. Ethics may challenge whether any action is likely to result in the rights of individuals (for example in a research group) being impacted, what would happen if information were to be released and in some way someone was able to identify that person or a group of people or if the information from a source was used inappropriately or without proper protocol (this is why we have a group such as NHMRC in place). Other ethical questions revolve around the area of who benefits from the research? What if this information was sold to a private insurance company? Would they use this information to increase premiums in a certain area based on population data from a data source such as the MyHealth Record, and would that be ethical? It is a good idea to also undertake a Google Scholar or even just a Google search in the first instance to see if there is information that you can use i.e. White or Grey literature, public scoping etc. You can then use some key words from this search to conduct a further search in the appropriate database of the Curtin Library Database. Another good idea is to draw a mind map of all of the issues or keywords highlighted from the assignment questions. What is it that you are looking for? What key concepts or themes can you identify?