Workshop Agenda

Informatics for Pathology-Based Specimen Resources

The Historic Inns of Annapolis

May 13 and 14, 1999

May 13, 1999

8:30 a.m. Registration. Each registrant will pick up an agenda, a list of workshop participants, and a tentative list of breakout assignments.

9:00 a.m. Welcome/Administrative Issues - Jules Berman

9:10 a.m. Organization of the Workshop - Jules Berman

9:30 a.m. Keynote speech: The Promise of Pathology Informatics - James Cimino

10:30 a.m. Break (and breakout group assignment reconciliation)

11:00 a.m. Overview of Ongoing Pathology Informatics Activities - Mike Becich

NOON Distributed Network Query Models - Joe Futrelle

1:00 p.m. Lunch (provided in workshop)

2:15 p.m. Charge for Breakout Sessions - Jules Berman

2:20 p.m. Session 1 (Chairs will determine times for afternoon break period)

Breakout Group 1. How will Pathology Informatics Systems be used?

(How could pathology informatics systems support clinical research, and what kind of research do we really want to support? What kinds of information are needed? Who are the providers? Who are the users? What are the existing efforts?)

Breakout Group 2. Legal and Ethical Issues Session 1: Confidentiality

(What are the legal and ethical barriers to such informatics systems? What data should be included and excluded from the database? What confidentiality, consent and security issues apply? How are IRB's evaluating minimal risk projects (e.g. projects where the primary risk to the patient is loss of confidentiality)? How might that change after implementation of double encryption protocols for patient identifiers?)

Breakout Group 3. Network Technical Issues

(Can common data elements be defined for query transactions? Are appropriate protocols (communications, interconnectivity, etc.), firewall, and data security software available? How can pathology informatics systems be linked to other informatics systems, such as genomic databases?)

Breakout Group 4. Political, Marketing, Economic Issues Session 1

(What will be the factors/entities that compete for the resources included in an informatics system designed to function primarily in support of government-funded cancer research? Will there be competition for database ownership and for tissue ownership? How could such systems be marketed? What would be the incentives for (and obstacles against) institutions participating in a tissue/data resource? What features are needed for such systems to be accepted and used? Are there parallel efforts in other fields that we can apply to this issue?)

4:30 p.m. Presentations of breakout discussions by the chairs of breakout groups and group discussion.

5:30 p.m. Announcements of Annapolis restaurant offerings and Adjournment.

May 14, 1999

9:00 a..m. Assembly (resolve any problems with the breakout group assignments.)

9:15 a.m. Overview (moderated by the panel of Day 1 chairs and conducted with the whole group) - what was accomplished day one?

10:00 a.m. Break

10:15 a.m. Session 2

Breakout Group 1. Models for a Pathology Informatics System

(What are possible model systems? How will the models deal with the issues of: real-time versus interval updated databases; virtual network versus monolithic database; legacy data versus prospective data?)

Breakout Group 2. Legal and Ethical Issues Session 2: Intellectual property

(What are the intellectual property issues of such a system? How can stakeholders be compensated for intellectual property. What are the legal risks? How can the incentives for attracting stakeholders (contributed by Day 1 group 4) be implemented in a way that is legal and ethical? How can charges be collected for the services or system?)

Breakout Group 3. Availability of data and tissues

(How complete and how available are the data elements and tissues stored in medical institutions that are needed for the database? How complete and how available are datasets that have been encoded in a standard nomenclature, such as SNOMED, ICD, UMLS? Where, besides medical institutions, is clinical and pathology data stored, and is that data accessible?)

Breakout Group 4. Political, Marketing, Economic Issues Session 2

(Can the government facilitate pathology informatics efforts? In what way can NCI encourage the standardization, regulation, or the development of pathology informatics systems? How can the data/tissue needs of the cancer community be addressed by a pathology informatics effort?)

NOON Lunch (provided in workshop)

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1:00 p.m. Presentations of breakout discussions

2:30 p.m. Break

2:45 p.m. Assembly Discussion, summary of major considerations for the development of

pathology information systems

4:00 p.m. Adjournment