What is Data for Decisions?
Data for Decisions is a University of Melbourne research initiative that uses de-identified electronic medical records from general medical practices for research. General medical practices, principally across Victoria, are invited to contribute.
What information is gathered?
The gathered data includes de-identified information about immunisations, medicines prescribed, illnesses, pathology and radiology results, measurements such as height, weight and blood pressure and lifestyle factors, such tobacco smoking.
What are the benefits of the research program?
Data for Decisions makes use of existing data to help:
- researchers generate new knowledge;
- train medical students;
- upskill doctors; and
- inform health policy makers to better respond to important health and health system issues.
Data for Decisions can enable researcher to help health professionals and the wider community know more about the safe use of medicines, disease patterns, appropriate referrals, outcomes of diseases or treatments, and the costs of care.
Privacy and data security
Before any information leaves the general practice, a software program (GRHANITE®) removes patient names, address, initials and full date of birth. Identifiable information about the dataset is not provided to researchers and no collected data is openly available or stored in an off-shore server. Click here for more about privacy and security.
Who will have access to the de-identified data?
Researchers involved in Data for Decisions are mostly associated with universities, but they might also be associated with different kinds of organizations such as government bodies or commercial companies. No one can access the data repository without first meeting the strict rules around data governance, ethics, privacy and secure handling of the data.
When de-identified records are used, individual patient consent is not normally needed. De-identified means that data fields where identifying information is normally entered are not extracted. For example, data fields known to normally contain names, addresses, full date of births and other individually identifying information are removed from records before they leave the medical practice. There are other measures also in place to protect the data and the identities of anyone represented in the data.
In the case of Data for Decisions, the ethics committee that reviewed the project determined that a patient waiver of consent was appropriate (as recommended by the National Health and Medical Research Council). This means that the medical practice and researchers are not required to get consent from individual patients for their de-identified records to be used for this research program.
This consent ‘waiver’ reflects the low risk of harm that can arise from the use of the data, the impracticality of obtaining consent (due to the quantity and age of the records), the risk mitigation plan that we have in place, and the benefits to the community of using the data for research.
Can I withdraw my data?
Data for your electronic medical record does not have to be included. If your GP or other primary healthcare provider is participating in Data for Decisions and you do not want your de-identified medical records to be used for this research program, let your healthcare professional or the practice manager know and they can withdraw you from the program. Withdrawing will NOT affect the direct care that you receive from your doctor.
There is much more information available on this website, including downloadable information statements aimed at GPs and healthcare consumers. We can also be contacted directly at the Department of General Practice at the University of Melbourne.