a1 London Deanery
a2 National Institute for Health and Care Excellence
a3 Cambridge Centre for Health Services Research and Institute of Public Health
a4 National Institute for Health and Care Excellence
Objectives: Procedures and new medical devices are typically introduced into healthcare systems with limited evidence, when they might be ineffective or unsafe. Systematic data collection (“registers”) can provide valuable “real world” evidence, but difficulties in funding registers are a major obstacle. A good economic case for the value of registers would therefore be useful.
Methods: (i) Literature search on specific purposes of registers. (ii) Surveys (a) of senior clinicians involved with registers, seeking examples of beneficial outcomes, and (b) of administrators, regarding costs of running registers. (iii) A scoping exercise for possible methods to value (financially) the outputs of registers.
Results: Four main categories of beneficial outcomes from registers were identified. These were—safety and quality assurance; training and quality improvement; complementing trial evidence and reducing uncertainty; and supporting trial research. Explicit examples of all these are presented, together with information about the costs of registers. Combining these with the scoping exercise we present suggestions for a methodology of assessing the value of registers across each of the categories.
Conclusions: 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.
G.L. is supported by a post-doctoral fellowship by the National Institute for Health Research (NIHR PDF-2011-04-047). The views expressed in this publication are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health. The authors thank all those who have been involved in the preparation of this manuscript. In particular, we are grateful to Martin Buxton and Karl Claxton for their advice; Hanan Bell, Lizzy Latimer, and Mirella Marlow for their comments on an early version of this manuscript; and David Cunningham, Robin Burgess, Claire Newell, Elaine Young, and Frank Keeley for their comments on the usefulness of registers run by their organizations. None of the authors have any conflicts of interest to declare.