Driving Health Care Improvement Without a Map: A Call for Improved Data Availability
London, UK September 4, 2015
Preamble:
Unwarranted variation in health care utilization, quality, outcomes, costs and efficiency among regions and health care systems is a pervasive and persistent problem, (OECD, 2014) and, by definition, represents differences in the performance of health care systems, rather than in population needs or preferences. But most countries lack a system of health care surveillance that could identify what problems occur and where, and that could monitor progress towards health care improvement. As seen in a recent survey of attendees of the Wennberg International Collaborative (www.wennbergcollaborative.org), a research network to promote the study of unwarranted variation, the availability of health care data to independent researchers and policy analysts in most countries is limited. While some countries are doing a good job at organizing and releasing health care data to researchers, in many other countries such data is incomplete, difficult to access, and costly. Researchers report that governments, insurers, and health care providers often effectively block public release of data required to monitor health system performance. These barriers to data access hide important differences in quality from the public view, slow the development of research into the causes of health care unwarranted variation, and prevent the evaluation of programs intended to improve health care.
Information on the patterns of health care performance is an essential component of well functioning and efficient national health care systems. Health care data helps to identify and locate:
- Regions, areas, and health care systems that lag or lead in delivering high quality and efficient care,
- Problems in the provision of care,
- The causes of unwarranted variation, and
- the magnitude of public benefit, if problems in care were remedied.
Measuring avoidable variation helps identify misused resources that can be reallocated to achieve better value at a time when health systems are struggling to be sustainable without sacrificing equity. Better public transparency and research on variation in health care performance accelerates improvements in care with benefits to patients while reducing costs. The absence of data blinds patients, physicians, health care managers, and policymakers from the information needed to understand and improve care. Data gathering, data access and independent data analysis are essential to the national provision of high value health care.
A Call for Action:
We, as members of the Wennberg International Collaborative, call for full and open access to health care data and information for legitimate research and policy analysis.
Principles in Access to Health Care Data:
- Data about patients and populations are owned by patients and the public, and therefore ought be accessible for independent analysis for improving population health and health care, subject to protection of patient confidentiality.
- Protecting patient confidentiality ought to be guaranteed using proven techniques so that this protection ought not become a pretext for hindering access to data for legitimate independent researchers and policy analysts. Patient privacy rights are aligned with the public right to have data that improves care.
- Information about variation in health system performance ought to be available to the public to benefit patient populations.
Steps that should be taken to promote access to health care data in the public interest:
- Develop national data trusts that organize health care, health, and population data from different data holders (e.g. providers, insurers, national and regional health systems).
- Continue to develop and implement standards of completeness and quality of health care data.
- Promote greater transparency in health care system performance by allowing the identification and comparisons of regions and health care systems, while maintaining patient confidentiality.
- Establish systems of efficient administrative and ethical review to respond to data requests from researchers and policy analysts in a timely fashion.
Signed by:
John “Jack” Wennberg
The Dartmouth Institue for Health Policy & Clinical Practice, USA
Gert Westert
IQ Healthcare, Nijmegen, The Netherlands
David Goodman
The Dartmouth Institue for Health Policy & Clinical Practice, USA
Gwyn Bevan
London School of Economics and Political Science, UK
Enrique Bernal-Delgado
Institute for Health Sciences in Aragón, Spain
Michael Barry
USA
Claudia Berlin
University of Bern, Switzerland
Jan Bocken
The Bertelsmann Foundation, Germany
Paulo Boto
Escola Nacional de Saúde Pública (ENSP)/Universidade Nova de Lisboa (UNL), Protugal
Anne Brabers
NIVEL, Netherlands
Cecilia Cazaban
USA
Sandra Garcia-Armesto
Institute for Health Sciences in Aragón, Spain
Marion Grote-Westrick
Bertelsmann Stiftung, Germany
Jostein Grytten
Norway
Astrid Guttmann
Institute for Clinical Evaluative Sciences, Canada
Dougal Hargreaves
UCL Institute of Child Health, UK
Illir Hoxha
Kosovo
Erica Ison
UK
Søren Johnsen
Denmark
Judith de Jong
The Netherlands
Ilmo Keskimaki
National Institute for Health and Welfare, Finland
Troels Kristensen
Denmark
Pia Kristensen
Department of Clinical Epidemiology, Denmark
Anne Kudsk Fallesen
Denmark
Heeyoung Lee
South Korea
Linda Leivseth
Centre for Clinical Documentation and Evaluation (SKDE), Norway
Xhyljeta Luta
University of Bern, Institute of Social and Preventive Medicine (ISPM), Switzerland
Ceu Mateus
Lancaster University, UK
Ducan McPherson
UK
Gregoire Mercier
CHU Montpellier, France
Mats Nilsson
Futurum – Academy for Health and Care Region Jönköping County, Sweden
Frede Olesen
Res. Unit for GP, Aarhus University, Denmark
Tetsuya Otbsubo
Kyoto University, Japan
Adrian Pana
Romania
Vittoria Polito
Public Health England, UK
Milo Puhan
University of Zurich, Switzerland
Shwan Ralston
Children’s Hospital at Dartmouth, USA
Ingvild Mathiesen Rosenlund
UiT The Arctic University of Tromsø, Norway
Jessica Sheringham
UCL, UK
Matthew Skellern
London School of Economics, UK
Afrin Steindal
SKDE, Norway
Leonie Sundmacher
Ludwig Maximilians University Munich, Germany
Andreas Taenzer
Dartmouth College, USA
Diane Watson
National Health Performance Authority, Australia
William Weeks
The Dartmouth Institue for Health Policy & Clinical Practice, USA