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METHODOLOGICAL CHALLENGES IN EVALUATING THE VALUE OF REGISTERS

Part of: Special Collection - Methods

Published online by Cambridge University Press:  12 March 2014

Jayne Taylor ,
Hannah Patrick ,
Georgios Lyratzopoulos  and
Bruce Campbell
Jayne Taylor
Affiliation:
London Deanery
Hannah Patrick
Affiliation:
National Institute for Health and Care Excellence
Georgios Lyratzopoulos
Affiliation:
Cambridge Centre for Health Services Research and Institute of Public Health
Bruce Campbell
Affiliation:
National Institute for Health and Care Excellence
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Abstract

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.

Keywords

RegistersValue
Type
Methods
Information
International Journal of Technology Assessment in Health Care , Volume 30 , Issue 1 , January 2014 , pp. 28 - 33
Copyright
Copyright © Cambridge University Press 2014 

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References

REFERENCES

1. Lyratzopoulos, G, Patrick, H, Campbell, B. Registers needed for new interventional procedures. Lancet. 2008;371:1734–1736.CrossRefGoogle ScholarPubMed
2. Wilmshurst, P. The regulation of medical devices: Unsatisfactory, unscientific and in need of a major overhaul. BMJ. 2010;342:d2822 CrossRefGoogle Scholar
3. Dent, T, Wortley, S, Campbell, B. New interventional procedures. BMJ. 2004;329:3–4 Google Scholar
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;279:1278–1281.CrossRefGoogle ScholarPubMed
5. Barkun, JS, Aronson, JK, Feldman, LS, et al. Evaluation and stages of surgical innovations. Lancet. 2009;374:1089–1096.Google Scholar
6. Graves, SE. The value of arthroplasty registry data. Acta Orthop. 2010;81:8–9.CrossRefGoogle ScholarPubMed
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;26:95–101.CrossRefGoogle ScholarPubMed
8. Smith, CR, Leon, MB, Mack, MJ, et al. Transcatheter versus surgical aortic-valve replacement in high-risk patients. N Engl J Med. 2011;364:2187–2198.CrossRefGoogle ScholarPubMed
9. University College London. MINAP ninth public report: How the NHS cares for patients with heart attack. London: University College; 2010.Google Scholar
10. Hillman, K, Chen, J, Cretikos, M, et al. Introduction of the medical emergency team (MET) system: A cluster-randomised controlled trial. Lancet. 2005;365:2091–2097 Google Scholar
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.Google Scholar
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;97:333–337.Google Scholar
13. Dreyer, NA, Garner, S. Registries for robust evidence. JAMA. 2009;302:790–791.Google Scholar
14. HQIP. Challenges in evaluation of quality improvement methodologies: The example of clinical audit, H.Q.I. Partnership, Editor 2011, Healthcare Quality Improvement Partnership.Google Scholar
15. Rees, G, Withers, K. Literature search - use of registers, 2010 (unpublished). London: National Institute for Health and Clinical Excellence.Google Scholar
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.Google Scholar
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):117–132.CrossRefGoogle Scholar
18. NHS South Central. Review of paediatric cardiac surgery services at Oxford Radcliffe Hospitals NHS Trust. Coventry: NHS South Central; 2010.Google Scholar
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;250:363–376.Google Scholar
20. Grilli, R, Taroni, F. Managing the introduction of expensive medical procedures: Use of a registry. J Health Serv Res Policy. 2006;11:89–93.CrossRefGoogle ScholarPubMed
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;29:563–570.Google Scholar
22. Academy Health. A first look at the volume and cost of comparative effectiveness research in the United States. Washington, DC: Academy Health; 2009.Google Scholar
23. National Joint Registry for England and Wales 8th Annual Report, 2011.Google Scholar
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;31:220–227.Google Scholar
25. Cohen, D. Out of joint: The story of the ASR. BMJ. 2011;342:1116–1122.Google Scholar