Methodological Challenges in Evaluating the Value of Registers

Abstract

This study is unique in addressing methods for determining the financial value of registers, based on the amount they cost versus the financial benefits which may result from the evidence generated. Developing the suggested methods could support the case for funding new registers, by showing that their use can benefit healthcare systems through more efficient use of resources, so justifying their costs.

Implementation of a diabetes in pregnancy clinical register in a complex setting: Findings from a process evaluation

“…While there is some discrepancy between survey results (with more people having indicated they use it than those registered for web-based use), this suggests that reported use is broader than log-in use for individual patient-care and likely includes use of reports and/or discussion of reports at meetings. Providing health care professionals with feedback improves their motivation to use a register and the quality of data collected can be improved [ 17 ]. The Partnership has been consulting and feeding back to health professionals since 2011 and will continue to provide feedback to established networks and partnerships, including further discussion as to whether the aims of the CR should continue to include that of individual patient-care in addition to reports.…”

“…Furthermore, respondents reported that CR reports and meetings were useful, with most users preferring the prospect of receiving reports rather than attending meetings. Reports that include data on process and outcome of care measures, as well as benchmarks for comparison have been recommended [ 17 ]. The CR reports currently include process and outcome measures, however benchmarking is restricted by limited comparative national data for Aboriginal women.…”

“…These factors may limit use of the CR. Minimising time lag is critical to providing effective feedback to care providers and improving health care delivery [ 17 ]. This is a clear benefit of the CR over other epidemiological data sources such as the MDC, in that MDC data are not reported for 2–3 years.…”

“…Furthermore, while paper-based data collection is more common, particularly in the establishment phase of CRs [ 32 ], electronic systems reduce chance of error and are more reliable than other systems [ 19 ]. CRs can be an effective resource when funded appropriately, with health care systems benefiting from their usage [ 14 , 17 ]. The DIP CR has received some funding for work thus far, however on-going funding remains a challenge and partners involved have always been mindful of long-term sustainability.…”

Splenic irradiation before hematopoietic stem cell transplantation for chronic myeloid leukemia: long-term follow-up of a prospective randomized study

“…The results add as well to the discussion on the role and potential of outcome registries. They can indeed contribute most valuable information [16].…”