How Registries Can Help Performance Measurement Improve Care

Suggests ways to better utilize databases of clinical information to evaluate care processes and outcomes and improve measurements of healthcare quality and costs, comparative clinical effectiveness research, and medical product safety surveillance

A framework for measuring quality in the emergency department

There is increasing concern that medical care is of variable quality, with variable outcomes, safety, costs and experience for patients. Despite substantial efforts to improve patient safety, some studies suggest little evidence of reductions in adverse events. Furthermore, there is limited agreement about what outcomes are expected and whether increased expenditure results in a real improvement in outcome or experience. In emergency medicine, many countries have developed specific indicators to help drive improvements in patient care. Most of these are time based and there is a lack of consensus regarding which indicators are high priority and what an appropriate framework for measuring quality should look like

The TOSCA Registry for Tuberous Sclerosis-Lessons Learnt for Future Registry Development in Rare and Complex Diseases.

Introduction: The TuberOus SClerosis registry to increase disease Awareness (TOSCA) is an international disease registry designed to provide insights into the clinical characteristics of patients with Tuberous Sclerosis Complex (TSC). The aims of this study were to identify issues that arose during the design, execution, and publication phases of TOSCA, and to reflect on lessons learnt that may guide future registries in rare and complex diseases. Methods: A questionnaire was designed to identify the strengths, weaknesses, and issues that arose at any stage of development and implementation of the TOSCA registry. The questionnaire contained 225 questions distributed in 7 sections (identification of issues during registry planning, during the operation of the registry, during data analysis, during the publication of the results, other issues, assessment of lessons learnt, and additional comments), and was sent by e-mail to 511 people involved in the registry, including 28 members of the Scientific Advisory Board (SAB), 162 principal investigators (PIs), and 321 employees of the sponsor belonging to the medical department or that were clinical research associate (CRA). Questionnaires received within the 2 months from the initial mailing were included in the analysis. Results: A total of 53 (10.4%) questionnaires were received (64.3% for SAB members, 12.3% for PIs and 4.7% for employees of the sponsor), and the overall completeness rate for closed questions was 87.6%. The most common issues identified were the limited duration of the registry (38%) and issues related to handling of missing data (32%). In addition, 25% of the respondents commented that biases might have compromised the validity of the results. More than 80% of the respondents reported that the registry improved the knowledge on the natural history and manifestations of TSC, increased disease awareness and helped to identify relevant information for clinical research in TSC. Conclusions: This analysis shows the importance of registries as a powerful tool to increase disease awareness, to produce real-world evidence, and to generate questions for future research. However, there is a need to implement strategies to ensure patient retention and long-term sustainability of patient registries, to improve data quality, and to reduce biases

Assessment of the Australian Rheumatology Association Database for national population health monitoring: working paper

This working paper uses the Australian Institute of Health and Welfare\u27s recently developed assessment framework to assess the suitability of the Australian Rheumatology Association Database as a potential new data source for population health monitoring of inflammatory arthritis. Summary A wide range of existing data sources could potentially be used to improve our understanding of arthritis in the Australian population. This working paper uses an assessment framework recently developed by the Australian Institute of Health and Welfare (AIHW) to assess the suitability of the Australian Rheumatology Association Database (ARAD) as a potential new data source for population health monitoring of inflammatory arthritis. More than 400,000 Australians have rheumatoid arthritis, the most common form of inflammatory arthritis. This auto-immune disease causes chronic inflammation, pain and swelling of the joints and can greatly reduce a person\u27s quality of life. The ARAD, managed by the Australian Rheumatology Association, is a national registry that collects health information from individuals with inflammatory arthritis. It was primarily established to monitor the benefits and safety of new treatments, particularly the biological disease-modifying anti-rheumatic drugs (bDMARDs). The AIHW\u27s assessment of the ARAD for the purpose of national population health monitoring is that: it has the potential to fill a range of identified data gaps in relation to key questions for monitoring arthritis, including treatment outcomes, disease progression, quality of life and economic impacts it has well established administrative and governance arrangements in place to ensure data quality and compliance with legislative requirements it has limited coverage which could potentially be improved by combining with, or linking to, other similar data sources on balance, it is a data source with the potential to provide useful information for population health monitoring of inflammatory arthritis, particularly if used in combination with, or linked to, other data sources

Editor's choice : European Society for Vascular Surgery (ESVS) 2020 clinical practice guidelines on the management of acute limb ischaemia

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