Why the U.S. needs access to patient-centered data over time: Lessons from the Netherlands

Since 1967, the research network of the Department of Primary and Community Care, Radboud University, Nijmegen, The Netherlands, has collected data on health problems patients present to their family physician (FP). In The Netherlands, FPs provide care for panels of patients and serve as their exclusive point of entry into the health care system. As a consequence, data collected in the network makes it possible to track individual medical life histories and get insight into the development of health problems over time.

The depression study¹ illustrates the importance of insight into the development and outcome of morbidity over time in the primary care population. It also illustrates that the disease is only part of patients’ stories. Even though most patients were free of depression, there was still an impact on their well-being, and they were burdened by mental symptoms: still obviously in need, but not necessarily of medical support. These Nijmegen experiences can help U.S. primary care develop longitudinal insights about the population, and help with decision support in their care.

A description of the methodology of the data collection – which predated the introduction of the electronic medical record now commonplace in Dutch family practice – was published in the European Journal of General Practice.² From the database, it is possible to identify the secular changes in primary care morbidity over time.³

The database is particularly suitable to study the course of morbidity and development of comorbidity. This can be illustrated with a study that documented the increased mortality and cardiovascular comorbidity of patients with type 2 diabetes mellitus.⁴ This finding triggered Dutch FPs to improve the quality of the care they provided to patients with diabetes. From this, a practice audit and feedback system was developed to support practice performance. Six years into this practice support, a substantial improvement in the control of blood glucose and HDL cholesterol could be demonstrated.⁵

More information on the database and study examples are available.^6-8 The value of longitudinal patient data is substantial for informed health care policy and for the development of best practice, in the United States as much as in The Netherlands. The Robert Graham Center is collaborating with Dr. van Weel and the Nijmegen team to study these databases and their value for comparative effectiveness studies.

1. van Weel-Baumgarten EM, van den Bosch WJ, van den Hoogen HJ, Zitman FG. The Long-Term Perspective: A Study of Psychopathology and Health Status of Patients With a History of Depression More Than 15 Years After the First Episode. General Hospital Psychiatry 2000;22:399-404.
2. Van Weel C. The Continuous Morbidity Registration Nijmegen: Background and history of a Dutch general practice database. European Journal of General Practice. 2008;14:5–12. 
3. Schers H, Bor H, van den Hoogen H, van Weel C. What went and what came? Morbidity trends in general practice from the Netherlands European Journal of General Practice. 2008(Suppl 1);14:13–24. 
4. de Grauw WJC, van de Lisdonk EH, van den Hoogen HJM, van Weel C. Cardiovascular morbidity and mortality in type 2 diabetic patients: a 22-year historical cohort study in Dutch general practice. Diabetic Med. 1995;12:117-22. 
5. de Grauw WJC, van Gerwen WHEM, van de Lisdonk EH, van den Hoogen HJM, van den Bosch WJHM, van Weel C. Outcomes of audit-enhanced monitoring of patients with type 2 diabetes. J Fam Pract. 2002;51:459-64. 
6. European Journal of General Practice. 2008;14.
7. Woolthuis EPK, de Grauw WJC, van Gerwen WHEM, van den Hoogen HJM, van de Lisdonk EH, Metsemakers JFM, et al. Yield of Opportunistic Targeted Screening for Type 2 Diabetes in Primary Care: The Diabscreen Study. Annals of Family Medicine. 2009;7:422-30.
8. van Weel C, de Grauw W. Family practices registration networks contributed to primary care research. Journal of Clinical Epidemiology. 2006;59:779-83.