Key recommendations for the use of the Health Data Navigator
- Resources such as the Health Data Navigator (HDN) act as important mechanisms for avoiding duplication of work, which researchers interested in analyzing the performance of health systems for particular diseases, population groups or settings are advised to explore before embarking on studies.
- The HDN allows the identification not only of relevant international and national databases but also of all relevant EU projects that used certain types of methodology, such as surveys or registry data. For information already collected and processed by others, this resource can obviate considerable time-consuming research.
- The comprehensive nature of the HDN database allows identification of gaps in available data. New projects should wherever appropriate build on the resources created by previous projects, possibly even through collaborative research agreements with those projects and studies. An example of this is EUNICE (the European Network for Indicators on Cancer), which uses survival data collection through cooperation with the EUROCARE project and indicators defined by ECHI (with input from EUROCHIP).
- By documenting contact points for comparative data projects, the HDN assists with finding potential collaborators for cross-country research, in particular when person-level data are used. Even though comparability issues were challenging, the EuroREACH case study on diabetes care showed that use of a consistent methodology and national registries permitted calculation and comparison of several important performance indicators.
- Data mapping in the HDN can be easily extended to other countries as the architecture of the HDN website is clear but flexible, and permits further development through defined reporting standards. A fundamental challenge common to many projects and initiatives in health care is the issue of sustainability. This is partly due to the time-limited construction of the projects and partly to lack of funding. Initiatives such as the HDN can act as a resource for sustaining interest beyond the formal lifetime of projects.
Future potential of the Health Data Navigator
- We believe that the EuroREACH project has demonstrated the operational feasibility and usefulness of the HDN, and that the HDN should be maintained and developed further. Good communication of data availability is crucial in order to maximise the benefits of comparative information, particularly in light of rapidly increasing IT capacity. Access to international and national databases should be simplified for both researchers and the general public. It is important to provide a platform such as the HDN that is user friendly and addresses the needs of users in terms of exporting data, access to charts, maps, briefs, etc. The HDN can enhance the use of administrative databases that are rich sources of information but are often underused. Data are often collected for the management purposes of one institution and access for researchers and other institutions can be quite difficult. Centralised data management – which should not be confused with centralised ownership of data – can help satisfy the data needs of different institutions and researchers.
- The HDN should become an important inventory of validated and accessible information relating to data management, including data protection, especially in light of the increasing availability of person-level data. Although access to data should be extended to the widest possible group of appropriate users, safeguards to ensure the privacy of subjects is essential. These include strict review and data use agreements, limitations on access to identified data, preparation of de-identified or encrypted datasets for outside researchers, and prohibitions on publications of identified data by researchers.
- The HDN could promote the transparency of definitions of indicators, data sources and methods. International databases often use different definitions, sources and methodologies for the same indicator. For the user, it is essential to be able to easily find the sources and methods used in the database. This would improve the reliability of cross-country comparisons. A good example is the OECD HCQI project, supported by the Commonwealth Fund and the Nordic Council, which has developed a set of quality indicators that have been validated by an increasing number of countries.
- The HDN offers a vehicle for supporting the development of comprehensive linked data systems. Such projects entail a considerable investment in researcher time and information technology, but they also require coordination and cooperation between the many data custodians in the private and public sector. Central funding of activities required for the development and maintenance of linked datasets can lessen the burden on organizations collecting data, improve the potential for cooperation, and reduce the cost of research.
Where we need more information that could be also featured on the HDN
- While important initiatives are under way or already established, such as the Eurobarometer Surveys, data on health care quality are scarce both at the national level and for international comparisons. In particular, investment is necessary to improve data on effective care pathways, on patient experience, on disparities in care utilisation as well as on costs of care.With a growing number of patients suffering chronic and multiple health problems, it becomes increasingly important to identify effective care pathways for improving system performance. This requires following patients in the health system with linked data from different providers and sectors (hospital, ambulatory care, pharmaceuticals etc.). The EuroREACH case study evaluating diabetes care is an important starting point in this context.
- Patient feedback is essential for improving health care provision, but data on patient experience is weak in many countries. At the European level, mandating patient surveys using common measures is necessary to guide regular and comparable collection of data.
- Information on the disparities in health care utilisation by different socio-economic and age groups as well as by gender, within and across European countries, is scarce and fragmented. Collection of improved data on health care consumption by different population groups should be supported, either through enhanced use of existing surveys or through new survey instruments.
- Information on health care costs and health expenditure for particular services and goods is often limited in scope and comparability, even though important efforts are made in this context, such as the joint data collection on health care expenditure coordinated by OECD, WHO and European Commission. At the national level, data on costs of healthcare providers, healthcare expenditure by different socio-economic groups and by disease are often particularly difficult to obtain for research purposes. Data governance and ownership plays a crucial role here. Improving the transparency of these data is necessary for a better understanding of health system performance and efficiency.