scholarly journals Metadata of Registries: Results from an Initiative in Health Services Research

2021 ◽  
Author(s):  
Jürgen Stausberg ◽  
Sonja Harkener
Keyword(s):  
Health Services Research ◽  
Health Services ◽  
Metadata Management ◽  
Second Phase ◽  
Services Research ◽  
Essential Condition ◽  
Fair Principles ◽  
The Mean ◽  
Funding Scheme ◽  
Data Elements

Metadata management is an essential condition to follow the FAIR principles. Therefore, metadata management was one asset of an accompanying project within a funding scheme for registries in health services research. The metadata of the funded projects were acquired, combined in a database compatible with the metamodel of ISO/IEC 11179 “Information technology – Metadata registries” third edition (ISO/IEC 11179-3), and analyzed in order to support the development and the operation of the registries. In the second phase of the funding scheme, six registries delivered a complete update of their metadata. The mean number of data elements increased from 245.7 to 473.5 and the mean number of values from 569.5 to 1,306.0. The conceptual core of the database had to be extended by one third to cover the new elements. The reason for this increase remained unclear. Constraints from the grant might be causal, a deviation from an evidence-based development process as well. It is questionable, whether the revealed quality of the metadata is sufficient to fulfill the FAIR principles. The extension of the metamodel of ISO/IEC 11179-3 is in agreement with the literature. However, further research is needed to find workable solutions for metadata management.

scholarly journals Recent Trends in Patient Registries for Health Services Research

2021 ◽  
Author(s):  
Jürgen Stausberg ◽  
Sonja Harkener ◽  
Sebastian C. Semler
Keyword(s):  
Health Services Research ◽  
Health Services ◽  
Digital Health ◽  
Electronic Patient Records ◽  
Patient Registries ◽  
Services Research ◽  
Efficient Operation ◽  
Patient Reported ◽  
Funding Scheme ◽  
Data Collections

Abstract Background Patient registries are an established methodology in health services research. Since more than 150 years, registries collect information concerning groups of similar patients to answer research questions. Elaborated recommendations about an appropriate development and an efficient operation of registries are available. However, the scene changes rapidly. Objectives The aim of the study is to describe current trends in registry research for health services research. Methods Registries developed within a German funding scheme for model registries in health services research were analyzed. The observations were compared with recent recommendations of the Agency for Healthcare Research and Quality (AHRQ) on registries in the 21st century. Results Analyzing six registries from the funding scheme revealed the following trends: recruiting healthy individuals, representing familial or other interpersonal relationships, recording of patient-reported experiences or outcomes, accepting participants as study sites, active informing of participants, integrating the registry with other data collections, and transferring data from the registry to electronic patient records. This list partly complies with the issues discussed by the AHRQ. The AHRQ structured its ideas in five chapters, increasing focus on the patient, engaging patients as partners, digital health and patient registries, direct-to-patient registry, and registry networks. Conclusion For the near future, it can be said that the concept and the design of a registry should place the patient in the center. Registries will be increasingly linked together and interconnected with other data collections. New challenges arise regarding the management of data quality and the interpretation of results from less controlled settings. Here, further research related to the methodology of registries is needed.

The alias dilemma: Implications for health services research

2005 ◽  
Author(s):  
Ruth Elwood Martin ◽  
Greg Hislop ◽  
Veronika Moravan ◽  
Garry Grams ◽  
Betty Calam
Keyword(s):  
Health Services Research ◽  
Health Services ◽  
Services Research

11. Who is in charge? Introducing criteria to evaluate health human resource (HHR) policy documents

2007 ◽  
Vol 30 (4) ◽  
pp. 33
Author(s):  
D. Rosenfield ◽  
C. Abrahams ◽  
S. Verma
Keyword(s):  
Health Services Research ◽  
Health Services ◽  
Human Resource ◽  
Grey Literature ◽  
Implementation Strategies ◽  
Policy Formulation ◽  
Health Human Resource ◽  
Services Research ◽  
Policy Documents ◽  
Care Technology

The maldistribution of and lack of access to health professionals continues to be a major issue for policymakers at all levels of government. Additionally, the basis by which Health Human Resource (HHR) policy is determined is unclear. Publications found in independent reports, peer-reviewed journals and most importantly, grey literature, can significantly influence or inform major policy decisions for “hot button” HHR issues (1) . We propose a framework that can be used to classify, rank and evaluate HHR policy/planning documents. Our framework creates six major criteria that are used to evaluate policy documents. These criteria are: 1) literature review, 2) source of primary information, 3) nature of recommendations, 4) implementation strategies, 5) credibility of authors and 6) credibility of publisher. Within each category, a score from zero to three (for criteria 1-4) or zero to two (criteria 5-6) is assigned, depending on the caliber of the document. Summing the scores from each section yields a document’s overall score. The intent of this measure is two-fold. Firstly, we want to create a tool that can be widely utilized by policymakers to help inform their decisions. Secondly, it can be used as a springboard to stimulate discussion and debate around HHR planning and policy formulation. National Information Center on Health Services Research and Health Care Technology. (NICHSR) Health Services Research and Health Policy Grey Literature Project: Summary Report. 2006. http://www.nlm.nih.gov/ nichsr/greylitreport_06.html. Accessed February 20, 2007.

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