1. Implementing Purpose Specific Records using IHE XDS Brief White Paper Proposal for 2008/09 presented to the IT Infrastructure Planning Committee J. Caumanns (eCR, Fraunhofer ISST, IHE-D) 16 October 2008

2. IT Infrastructure Planning Committee Motivation The EC Directive on the protection of personal data contains a number of key principles which must be complied with. Anyone processing personal data must comply with the eight enforceable principles of good practice: Directive on the protection of personal dataDirective on the protection of personal data –Fairly and lawfully processed. –Processed for limited purposes. –Adequate, relevant and not excessive. –Accurate. –Not kept longer than necessary. –Processed in accordance with the data subject's rights. –Secure. –Not transferred to countries without adequate protection. source:http://en.wikipedia.org/wiki/Data_privacy#Europe no purpose = data retention !

3. IT Infrastructure Planning Committee Motivation EHR (LR) Patient Purpose for Data Collecting (e. g. acute care case) Purpose for Data Collecting (e. g. chronical disease) MDO affinity domain policy, access rights EHR-CR

4. IT Infrastructure Planning Committee Purposes as Slices and Dices Each purpose can be expressed as a slice or a dice of the full n-dimensional “cube” of a patient’s data Each purpose is associated with a policy: - access restrictions - content restrictions - obligations -...

5. IT Infrastructure Planning Committee Health Records: Types Care-delivery Record (EHR-CR): A Care-delivery Record abstracts the information system or systems of a care delivery organization, which may support a broad variety of healthcare facilities. [IHE ITI 4.0].Care-delivery Record (EHR-CR): A Care-delivery Record abstracts the information system or systems of a care delivery organization, which may support a broad variety of healthcare facilities. [IHE ITI 4.0]. Longitudinal Record (EHR-LR): A longitudinal record is a collection of patient data that is contributed from multiple EHR-CRs. Such a record is often called a »patient record« or a »healthcare record« depending on the status of the provider.Longitudinal Record (EHR-LR): A longitudinal record is a collection of patient data that is contributed from multiple EHR-CRs. Such a record is often called a »patient record« or a »healthcare record« depending on the status of the provider. Disease-oriented Record (EHR-DR): A disease-oriented record is a special kind of longitudinal record that is focussed on a single disease (or a set of closely related diseases). It only contains data from care acts that are related with this disease’s treatment.Disease-oriented Record (EHR-DR): A disease-oriented record is a special kind of longitudinal record that is focussed on a single disease (or a set of closely related diseases). It only contains data from care acts that are related with this disease’s treatment. Health-summary Record (EHR-SR): A health-summary record contains condensed medical data of a patient (e. g. medication lists and emergency data sets).Health-summary Record (EHR-SR): A health-summary record contains condensed medical data of a patient (e. g. medication lists and emergency data sets).... and probably many more... and probably many more

6. IT Infrastructure Planning Committee Co-Existence of Multiple Record Types Strategy 1: One central, complete EHR-LR for each patient. Other record types can be “simulated” by filtering the EHR-LR. Strategy 2: Distributed, autonomous EHR-CRs as the data base. Other record types set up as an additional layer on top of EHR-CRs. Strategy 3: Records as aggregations of distributed folders (encounters).

7. IT Infrastructure Planning Committee Topics to be covered by the White Paper types of records for specific purposes (dimensions of the »cube« and the respective slices and dices)types of records for specific purposes (dimensions of the »cube« and the respective slices and dices) evaluation of different approaches for implementing purpose specific records (e. g. using folders, nesting registries, multiple identifiers per patient)evaluation of different approaches for implementing purpose specific records (e. g. using folders, nesting registries, multiple identifiers per patient) dealing with overlapping recordsdealing with overlapping records aspects of a policy to express the purpose of a record (e. g. access restrictions)aspects of a policy to express the purpose of a record (e. g. access restrictions) means to bind a policy to a case specific record and to enforce that policy (i.e. how can other profiles such as BPPC and XPP be integrated)means to bind a policy to a case specific record and to enforce that policy (i.e. how can other profiles such as BPPC and XPP be integrated) implications on XDR and XDMimplications on XDR and XDM spanning purpose specific records among multiple affinity domains by using XUA, XCA, and XCPIspanning purpose specific records among multiple affinity domains by using XUA, XCA, and XCPI workflow aspects (e. g. discovering a specific record) and optimisationsworkflow aspects (e. g. discovering a specific record) and optimisations life cycle aspects (e. g. the purpose is no longer given or is moving)life cycle aspects (e. g. the purpose is no longer given or is moving) real-life examplereal-life example

8. IT Infrastructure Planning Committee Editors Jörg Caumanns (eCR, Fraunhofer ISST, IHE-D)Jörg Caumanns (eCR, Fraunhofer ISST, IHE-D) Jens-Uwe Thieme/Bas von Poppel (iSoft)Jens-Uwe Thieme/Bas von Poppel (iSoft)......