Challenges in Medical Patients' Data Management: a comparative analysis (United States, United Kingdom, France and Quebec - Canada)

Presenter: Jean Pierre Caliste, University of Technology of Compiegne, France

Author: Christian Bourret, University of Marne-la-Vallée and CODATA France, France


. Specificity of Medical Patients' Data Management

Firstly we will highlight the main specificities of medical patient's data: sensitive, personal with the strong concerns of confidentiality (privacy) and the problem of different levels of data storage (scattering and compartmentalization).

We will analyse the specific and restricting legislation: HIPAA (Health Insurance Portability and Accountability Act) decree in the United States, Commission Nationale de l'Informatique et des Libertés (National Commission for Informatics and Liberty) in France with the developing role of European directives, Commission d'Accès à l'Information in Québec (Canada).


. Different responses in specific national contexts

Secondly we will analyse different responses in specific national contexts or backgrounds at different levels (micro, meso and macro) of concerns.

- In the United States, the issue of the different levels of legislation between Federate States and Federal Government level. We will discuss two different projects: patient's data management in the most important Health Maintenance Organization (Kaizer) and the NHIN (National Health Information Network) project.

- In France, we will present three different realizations or projects :  the SNIIR-AM (Système d'Information Inter Régimes de l'Assurance Maladie or Federative Information System of Sick Insurance) which would be one of the most important data warehouse in the world, the Réseau Santé Social or Heath and Social Network for transferring paying back data and the difficulty of global management and interconnection of these different levels with the new project of Dossier Médical Personnel (DMP) or French Electronic Health Record.

- Then we will present the main evolutions in the United Kingdom with the specific programme for NHS England: "Connecting for Health" with a central data warehouse, a strong task force (project management) and data management in five regional clusters (North East, North West & West Midlands, Eastern, Southern, London).

. Same challenges converging on Interoperability

If there exist different responses, finally the challenges tackled are roughly the same:

- Data property.
- Data access and management of access' authorizations.
- The good level of data storage and data management (regional ?).
- The issue of shared medical secrecy
- That of doctors' collective responsibility or individual.
- All these challenges converge on the central one of compartmentalization and its main response: Interoperability. We 'll present some elements of responses.


Conclusion

Finally we'll point out the importance of "Dialogic" responses  making converging traditionally opposed levels: individual versus global, public versus private Health Management in a perspective of  Management of Complexity centred on Data Management.

Health Organizations  challenges are "hologrammatic" ones:  very representative of our Information and Knowledge Society Challenges.  

Keywords: Data ; Health ; Network ; Interoperability