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  • Jayne Taylor (a1), Hannah Patrick (a2), Georgios Lyratzopoulos (a3) and Bruce Campbell (a2)


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.



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1. Lyratzopoulos, G, Patrick, H, Campbell, B. Registers needed for new interventional procedures. Lancet. 2008;371:17341736.
2. Wilmshurst, P. The regulation of medical devices: Unsatisfactory, unscientific and in need of a major overhaul. BMJ. 2010;342:d2822
3. Dent, T, Wortley, S, Campbell, B. New interventional procedures. BMJ. 2004;329:34
4. Wennberg, D, Lucas, FL, Birkmeyer, JD, Bredenberg, CE, Fisher, ES. Variation in carotid endarterectomy mortality in the Medicare population: Trial hospitals, volume, and patient characteristics. JAMA. 1998;279:12781281.
5. Barkun, JS, Aronson, JK, Feldman, LS, et al. Evaluation and stages of surgical innovations. Lancet. 2009;374:10891096.
6. Graves, SE. The value of arthroplasty registry data. Acta Orthop. 2010;81:89.
7. Patrick, H, Gallaugher, S, Czoski-Murray, C, et al. Usefulness of a short-term register for health technology assessment where the evidence base is poor. Int J Technol Assess Health Care. 2010;26:95101.
8. Smith, CR, Leon, MB, Mack, MJ, et al. Transcatheter versus surgical aortic-valve replacement in high-risk patients. N Engl J Med. 2011;364:21872198.
9. University College London. MINAP ninth public report: How the NHS cares for patients with heart attack. London: University College; 2010.
10. Hillman, K, Chen, J, Cretikos, M, et al. Introduction of the medical emergency team (MET) system: A cluster-randomised controlled trial. Lancet. 2005;365:20912097
11. Gliklich, R, Dreyer, N. Registries for evaluating patient outcomes, in Agency for Healthcare Research and Quality, Rockville, MD, A.f.H.R.a. Quality, Editor 2010.
12. Davenport, K, Timoney, AG, Keeley, FX, et al. A 3-year review of The British Association of Urological Surgeons Section of Endourology Laparoscopic Nephrectomy Audit. BJU Int. 2005;97:333337.
13. Dreyer, NA, Garner, S. Registries for robust evidence. JAMA. 2009;302:790791.
14. HQIP. Challenges in evaluation of quality improvement methodologies: The example of clinical audit, H.Q.I. Partnership, Editor 2011, Healthcare Quality Improvement Partnership.
15. Rees, G, Withers, K. Literature search - use of registers, 2010 (unpublished). London: National Institute for Health and Clinical Excellence.
16. Sibanda, N, Copley, LP, Lewsey, JD, et al. Revision rates after primary hip and knee replacement in England between 2003 and 2006. PLoS Med. 2008;5:e179.
17. Paxton, EW, Namba, RS, Maletis, GB, et al. A prospective study of 80,000 total joint and 5000 anterior cruciate ligament reconstruction procedures in a community-based registry in the United States. J Bone Joint Surg Am. 2010;92 (Suppl 2):117132.
18. NHS South Central. Review of paediatric cardiac surgery services at Oxford Radcliffe Hospitals NHS Trust. Coventry: NHS South Central; 2010.
19. Hall, BL, Hamilton, BH, Richards, K, et al. Does surgical quality improve in the American College of Surgeons National Surgical Quality Improvement Program: An evaluation of all participating hospitals. Ann Surg. 2009;250:363376.
20. Grilli, R, Taroni, F. Managing the introduction of expensive medical procedures: Use of a registry. J Health Serv Res Policy. 2006;11:8993.
21. Thomas, SM, Beard, JD, Ireland, M, Ayers, S. Results from the prospective registry of endovascular treatment of abdominal aortic aneurysms (RETA): Mid term results to five years. Eur J Vasc Endovasc Surg. 2005;29:563570.
22. Academy Health. A first look at the volume and cost of comparative effectiveness research in the United States. Washington, DC: Academy Health; 2009.
23. National Joint Registry for England and Wales 8th Annual Report, 2011.
24. Larsson, S, Lawyer, P, Garellick, G, Lindahl, B, Lundstrom, M. Use of 13 disease registries in 5 countries demonstrates the potential to use outcome data to improve health care's value. Health Aff (Millwood). 2012;31:220227.
25. Cohen, D. Out of joint: The story of the ASR. BMJ. 2011;342:11161122.



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