The availability of health data about individuals, gathered from surveys or health care systems, are an invaluable resource for researchers who wish to examine interactions between individuals and the healthcare they receive.
Epidemiologists and social researchers increasingly work together to understand the wider determinants of health. To achieve this requires the use of health data linked to other sources.
However, there are significant challenges when accessing and managing health data. These include:
- The confidential nature of health data. Trust between patients and their physicians is paramount; accessing patient data should not compromise this
- That while established practices for curating data in the social sciences exist, these are rarely applied when managing health data outside of social sciences. This reflects the administrative nature of much of the health data required for analyses; and the difficult circumstances in which health data are often collected.
There will be many data professionals who are charged with managing the acquisition, storage, and management of health data for researchers at their institutions. This can include facilitating linkages to other sources of data.
The IASSIST Health Data Interest Group has been established to bring together data practitioners and technicians who manage access to health data for research purposes, in order to share expertise and enable members to overcome challenges in their day-to-day roles.
The aims of the IASSIST Health Data Interest Group are:
- To share knowledge and explore sources of health data
- To share expertise in the acquisition and management of health data (including technologies that may be unique to the extraction of health data)
- To promote best practice when health and other sources of data are combined
- Ensure group members are aware of opportunities to promote their work at conferences and other events, and through channels such as blogs and journals
- To advocate for improvements in health data collection in the health service (and to support the health service to effectively use data to improve the quality of health care patients receive)
- International comparative health data, and international comparisons of health data collection
- Health-related data about individuals and about health care systems
- Licencing and other access methods for restricted health data (such as proprietary health data)
- Linking health data with other types of data at a person-record level
- Curation of health data
- Opinion data on health
- Types of health data
- Quantitative and qualitative sources of data
- Data from clinical trials
- Imaging data
- Disease registers
- Administrative data
To meet the Aims and cover the Topics listed above, the group shall:
- Propose and organise a health data themed/health data linkage workshop at a forthcoming IASSIST conference
- Contribute to the field by presenting about health data and health and social data linkages at IASSIST conference sessions
- Publish on topics about health data and health and social data linkages in IASSIST Quarterly
- From time-to-time, organise webinars and virtual meetings to share and exchange information
For more information please contact:
2020-2021 Chair: Richard Welpton, Senior Data Manager, The Health Foundation, richard.welpton [ at ] health.org.uk