1. XDS P2P (revised) Brief Profile Proposal for 2008/09 presented to the IT Infrastructure Planning Committee A. Kassner (IHE-D), J. Caumanns (eCR) 01 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 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

5. 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).

6. IT Infrastructure Planning Committee Discussion The proposed profile addresses two problems: 1.Discovering records of the same patient within different affinity domains The proposed XCPI Profile seems adequate to solve this problem (use cases where pseudonyms instead of PIDs are used should be considered)The proposed XCPI Profile seems adequate to solve this problem (use cases where pseudonyms instead of PIDs are used should be considered) 2.Handling different types of Records for different purposes MDOs might be within multiple recordsMDOs might be within multiple records multiple disjoint records per patientmultiple disjoint records per patient different usage policies and access policiesdifferent usage policies and access policies Suggestion: White paper on Issue #2 to investigate on what can be implemented (and how) with recent profiles and what is missing

7. IT Infrastructure Planning Committee Annex: Use and No-Use of Folders

8. IT Infrastructure Planning Committee Folder = Purpose?

9. IT Infrastructure Planning Committee The Myth and Benefits of Folders (1/2) IHE ITI 4.0: The purpose of an XDS Folder is to provide a collaborative mechanism for several XDS Document Sources to group XDS Documents for a variety of reasons (e.g. a period of care, a problem, immunizations, etc.) and to offer the Document Consumers a means to find all Document Entries placed in the same Folder.IHE ITI 4.0: The purpose of an XDS Folder is to provide a collaborative mechanism for several XDS Document Sources to group XDS Documents for a variety of reasons (e.g. a period of care, a problem, immunizations, etc.) and to offer the Document Consumers a means to find all Document Entries placed in the same Folder. IHE XDS places all meta data of all documents into a single database. The objectives sketched above can much better be archived using SQL-Queries on attributes than by forcing the document provider to think about mental organization structures of a future user.IHE XDS places all meta data of all documents into a single database. The objectives sketched above can much better be archived using SQL-Queries on attributes than by forcing the document provider to think about mental organization structures of a future user. As a means for a faster locating of data, folders only make sense at the consumers side (i. e. using views). Forcing the producer to select the folder would be like forcing the sender of an e-mail to name the best matching local mail folder at all the receivers‘ sides.As a means for a faster locating of data, folders only make sense at the consumers side (i. e. using views). Forcing the producer to select the folder would be like forcing the sender of an e-mail to name the best matching local mail folder at all the receivers‘ sides. => All XDS implementations we know, do not support folders!=> All XDS implementations we know, do not support folders!

10. IT Infrastructure Planning Committee The Myth and Benefits of Folders (2/2) Myth: Folders speed up browsing through a large data set, as the system must only read the data within the selected folder.Myth: Folders speed up browsing through a large data set, as the system must only read the data within the selected folder. Reality: E. g. IHE XDS keeps all document metadata in a central database. Finding the entries assigned to a folder named “x” requires the same amount of time as finding all entries assigned to a certain time span or a certain disease.Reality: E. g. IHE XDS keeps all document metadata in a central database. Finding the entries assigned to a folder named “x” requires the same amount of time as finding all entries assigned to a certain time span or a certain disease. But: Folders speed up browsing through large distributed data sets, as long as folders do not cross node boundaries. For a system with multiple registries, folders are a simple mechanism to reduce queries for a folder’s contents to a local operation.But: Folders speed up browsing through large distributed data sets, as long as folders do not cross node boundaries. For a system with multiple registries, folders are a simple mechanism to reduce queries for a folder’s contents to a local operation. But: Folders provide no help in optimizing search operations (except for situations with 1:1 mappings of predefined queries onto folders)But: Folders provide no help in optimizing search operations (except for situations with 1:1 mappings of predefined queries onto folders)