Our earlier blog posts highlighted the irony of numerous ethical reviews for the same research project, which makes us wonder about the validity of multiple opinions, besides creating huge administrative burdens and wasted time and costs for the researcher as well as the ethics committees themselves. This is especially the case in studies that evaluate service quality, interventions and outcomes, as they are required to follow patients across several hospitals, health services, local health districts and across jurisdictions, and call for utilizing data from different data collections.
The blog posts are intended to be read in sequence. We welcome your comments, feedback and suggestions.
LATEST BLOG POSTS
Thanks to a billion-dollar annual investment in the Pharmaceutical Benefits Scheme (PBS) the bulk of Australia’s prescription medicine use is subsidised. One obvious benefit to this is that prescription medicine is more affordable for Australians. A less obvious benefit is that routinely collected PBS data provides comprehensive representation of prescription medicine use at a population level. This makes it an extraordinarily valuable data resource. The linkage of PBS, MBS and other Commonwealth collections, such as those held by the Department of Social Services, can expand our opportunities to explore value, real-world use and pivotal issues such as equity of access.
Service Delivery or Research - A Case of Consent
Health and medical researchers are sensitive to the privacy, confidentiality and security of the data they collect or are provided with. In addition, they are most aware of the need for ethics approval(s) to use or gather data to conduct research and analysis. Indeed, a comprehensive understanding of data security, informed consent and ethical use is central to the professional life of a health and medical researcher. But the types of projects, and their data requests and analysis, are as diverse as the persons undertaking the research. It is vital then that our governance policies and processes for data, ethics, consent and privacy are able to respond to these differences. In this blog we look at one example where this has not been the case.
In our previous blog, The Ethics Quagmire: Case Studies you might have read the case study by Kathy Tannous concerning the difficulties she has faced getting ethics approval from three ethics committees. But are there problems closer to home for researchers, in their own institutions, even when only one HREC is involved? We think so. But the solution may also lie with these institutions, in the better application of existing guidelines. We explain how below.
In Flying Blind 2, we have been highlighting the tortuous route of the researcher’s journey, as they negotiate the ethics processes and the myriad data sources required for their research. In the next few blogs, Australian health and medical researchers who have been through the journey, present real-life case studies and back-of-the-envelope calculations of what it takes to identify existing data sets and negotiating the ethics processes, to link the data sets to support their research.
What is sad for Australian health research is that these numbers do not reflect reseachers' time spent in actually performing research!
We hope the case studies will shine a light on the complexities and the lack of efficiency and transparency around tapping into de-identified pre-existing administrative data sets from multiple states and federal health data sources.