MEDICINEINSIGHT A scalable and linkable general practice data set…. Yuen Ai Lee, NPS MedicineWise HDA 2019
AGENDA MedicineInsight: - Introduction - Data governance & ethics approval - Show & tell: Aggregated statistics Specific topics for today: - Privacy Preserving Record Linkage (PPRL) & Pilot results - Solution architecture of the Analytics platform - Technology adoption and implementation approach (including ensuring information security)
MEDICINEINSIGHT: INTRODUCTION • MedicineInsight is a large scale general practice data set established to support quality improvement in Australian primary care and post-market surveillance of medicines. • MedicineInsight data can be used to support a range of activities to improve the delivery of health care and population health, post-market surveillance of medicines, influence policy development, and inform health care decision making at local, regional and national levels. • MedicineInsight data is not to be accessed for marketing or promotion of a pharmaceutical product.
MEDICINEINSIGHT: ETHICS APPROVAL • The MedicineInsight program, in its pilot stage, was granted ethics approval by the RACGP National Research and Evaluation Ethics Committee (NREEC) in January 2013. • Once the pilot was completed at the end of 2013, the program transitioned to a quality improvement activity, yet still continued to operate within the same ethical framework as the pilot stage of the program, including adhering to relevant ethical principles and State, Territory and Commonwealth legislation. • In December 2017, we sought and received ethics approval for our standard operations and uses of the MedicineInsight database. This covered NPS MedicineWise’ use of MedicineInsight for the development of, or to inform the content for: Clinical Improvement, Data Analyses and Publications. • Types of projects that will require additional independent ethics committee approval: (not exhaustive) o research projects by other organisations using MedicineInsight data o where MedicineInsight is linked with another dataset o where the research topic or data being used in a project is about vulnerable populations or sensitive conditions • For guidance or information on ethics approvals: https://www.nps.org.au/medicine-insight/using- medicineinsight-data.
MEDICINEINSIGHT: DATA GOVERNANCE • Sharing of MedicineInsight data is subject to our robust data governance framework, including approval by our independent Data Governance Committee. • The MedicineInsight program has strong governance processes in place to mitigate any risk to participants and ensure the program is run lawfully, ethically and for the purpose of public good. • The Committee is made up of consumer advocates, privacy and security experts, general practitioners and researchers. • Link to approved projects: https://www.nps.org.au/approved-projects-using-medicineinsight-data • Types of projects that will require additional independent ethics committee approval: o research projects by other organisations using MedicineInsight data o where MedicineInsight is linked with another dataset o where the research topic or data being used in a project is about vulnerable populations or sensitive conditions • For more info: https://www.nps.org.au/medicine-insight/using-medicineinsight-data
MEDICINEINSIGHT: SHOW&TELL • Link to Power BI: Click • Please note that MedicineInsight is a de-identified data set. NPS MedicineWise does not extract any identifiable attributes for any patient. • Each patient record in MedicineInsight is assigned a unique patient ID. This unique patient ID is a combination of the “practice’s name” and the Clinical Information System (CIS) Patient ID. The CIS Patient ID is a system-generated ID assigned to each unique patient record. Please note one patient may have more than 1 CIS Patient IDs. • Actual number of patients within a practice can be done via internal linkage. (shown on slides 8-10) • Actual number of patients within the MedicineInsight data set can be determined using linkage across all practices. (shown on slides 8-10)
MEDICINEINSIGHT: PPRL • PPRL: Privacy Preserving Record Linkage • Within the MedicineInsight context, this means: o Identifiable information does not leave the practice. o Irreversible linkage keys and linkage hashes are generated at the practice. Irreversible means the linkage keys and linkage hashes cannot be reversed to its original identifiable value. • MedicineInsight supports the following linkage keys and linkage hashes: o Encrypted SLK 581 linkage key (customer-specific private key). This means the encrypted SLK 581 linkage key can only be decrypted by the linkage unit. Examples of linkage units include AIHW. o GRHANITE linkage hashes o Bloom Filters linkage hashes (in progress)
MEDICINEINSIGHT: BLOOM FILTERS • We have recently built and tested the technology to automate creation and collection of Bloom Filters with Curtin University (WA- Center for Data Linkage). • To test this technology, we linked the patient data from 3 practices in NSW. • The following is the total number of records and total number of people (unique patients) within each of the three practices: *Site names are de-identified to preserve the privacy of the practice. • Number of people is less than number of records as we have removed duplicate patients within a practice through internal linkage. • We still need to perform cross-practice linkage to determine the total of unique patients for all three sites.
MEDICINEINSIGHT: BLOOM FILTERS • The following is the identifiable attributes used to generate linkage hashes (de-identified and irreversible hashes) at the practice and the completeness for each of the identifiable attributes. Please note that identifiable attributes remain at the practice. Identifiable attributes are not shared with linkage units or NPS MedicineWise. *Site names are de-identified to preserve the privacy of the practice.
MEDICINEINSIGHT: BLOOM FILTERS • The following is a Venn diagram showing the matches between the three practices. • As expected, there was a higher overlap between Site B and Site C as the practices are only 15 minutes’ drive from each other. Site A 131,188 205 138 18 Site B Site C 4,192 44,485 74,477 *Site names are de-identified to preserve the privacy of the practice.
MEDICINEINSIGHT: TECHNOLOGY *Please note that we are currently transitioning to this platform. Testing and audits are ongoing.
MEDICINEINSIGHT: INFO SECURITY Multi-cloud platform. We only select cloud service providers who have been rated as “PROTECTED” by the Australian Signals Directorate. “PROTECTED” means this provider’s services can be used to host government and healthcare data. Sovereignty of data: All our services are only hosted in the Australian region. Each region is a cluster of data centres that are based in Australia only. Access for approved NPS MedicineWise team members only: All our services can only be accessed via the NPS MedicineWise network. The relevant NPS MedicineWise team member can only access if they have been assigned to the relevant security groups. Design and post-implementation audit by independent experts: We build security into the design using independent information security experts. Post implementation, our solution is reviewed by independent information security experts. Monitoring All our services are monitored and audit-trailed. Automatic alerts are configured and will be generated if there are un-planned activities.
MEDICINEINSIGHT: NEXT STEPS Linkage - We plan to extend the Bloom Filters linkage across all MedicineInsight practices. - We plan to link the MedicineInsight data in Victoria to a Victorian hospital data set. (ethics and data governance access pending) OMOP Common Data Model Investigate visualisation offerings
ANY FURTHER QUESTIONS? Contact information: Yuen Ai Lee, Data Warehouse and Health Technology Solutions Manager, NPS MedicineWise Email: ylee@nps.org.au https://www.linkedin.com/in/yuen-ai-lee-20b06919
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