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Analysis

Patient focused registries can improve health, care, and science

BMJ 2016; 354 doi: https://doi.org/10.1136/bmj.i3319 (Published 01 July 2016) Cite this as: BMJ 2016;354:i3319
  1. Eugene C Nelson, professor1,
  2. Mary Dixon-Woods, professor2,
  3. Paul B Batalden, professor1,
  4. Karen Homa, researcher3,
  5. Aricca D Van Citters, researcher1,
  6. Tamara S Morgan, researcher1,
  7. Elena Eftimovska, professor4,
  8. Elliott S Fisher, professor1,
  9. John Ovretveit, professor4,
  10. Wade Harrison, researcher1,
  11. Cristin Lind, professor5,
  12. Staffan Lindblad, professor4 5
  1. 1Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine, Dartmouth College, 1 Medical Center Drive, Lebanon, NH 03766, USA
  2. 2Institute of Public Health, University of Cambridge School of Clinical Medicine, Cambridge, UK
  3. 3Dartmouth-Hitchcock Health, Lebanon, NH, USA
  4. 4Medical Management Centre, Karolinska Institutet, Stockholm, Sweden
  5. 5Quality Register Center Stockholm, Karolinska Institutet and Stockholm County Council, Stockholm, Sweden
  1. Correpondence to: T S Morgan tamara.s.morgan{at}dartmouth.edu

Eugene Nelson and colleagues call for registries of care data to be transformed into patient centred interactive learning systems

Large scale collection and analysis of data on patients’ experiences and outcomes have become staples of successful health systems worldwide. The systems go by various names—including registries, quality registries, clinical databases, clinical audits, and quality improvement programmes1 2— but all collect standardised information on patients’ diagnoses, care processes, and outcomes, enabling systematic comparison and analysis across multiple sites. Hundreds of what we will term, for simplicity, “registries,” now exist around the world. The United Kingdom is home to over 50 clinical audit programmes,3 the United States has over 110 federally qualified registries certified to report quality metrics,4 and Sweden, perhaps the registry epicentre, has over 100, covering conditions from birth to frail old age.5

These registries have had far reaching effects. They facilitate public reporting, retrospective and prospective research, professional development, and service improvement. They reveal variations in practices, processes, and outcomes, and identify targets for improvement. In the UK, they have been associated with many notable successes, including improvements in management of cardiovascular disease and stroke,6 7 cancer,8 and joint replacement.9

Unmet potential

Nevertheless, few registries have realised their full potential. Feedback of data to participating clinical centres often lags well behind actual care, making data obsolete and less useful. Many registries have not caught up with the digital era, continuing to rely on manual data entry (and often double entry), which is tedious, expensive, and prone to error. The data may be restricted to a small number of uses, rather than being used for multiple purposes. Perhaps most problematic of all is that many registries have limited patient involvement in their design, oversight, or operations.10 Patients may not be asked to identify …

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