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Documenting the Cancer Journey

Peter Paul Yu, MD, FACP, FASCO

06 Oct 2012 5:39 PM

It is hurricane season once again and it has been 7 years since Katrina wreaked havoc on the Gulf Coast, displacing thousands of patients with cancer, many under active treatment. Since that time the world has changed, but the problems of coordination and continuity of care exposed by the Katrina displacement remain. In the aftermath of that disaster, ASCO conceived the Cancer Treatment and Summary Plan documents as a critical tool to assist in communication between providers and patients. Since that time, other versions of the same concept have arisen, originating from ONS and several patient advocacy groups, attesting to the validity of this need. Yet uptake has been poor.

The constraints of paper documents are part of the problem. Since they are static documents of a patient experience that is still continuing to evolve, the data transmitted may be out of date. The paper format restricts how and what information is presented to the user; one size must fit all. The amount of work required to collect and enter data is considerable and the source of the data may not be identified calling into question the accuracy of that data. Ideally the documents must ensure that the data comes from an identified trusted source, state the time of document creation, and have flexibility to present the data differently as best meets the need of different audiences.

Another factor limiting the adoption of summary documents in practice is that there is no convenient way to share or store the documents. Printing and scanning documents or exchanging PDF documents does not allow the degree of interoperability needed. Electronic health record vendors lack standards to work within formatting and messaging these documents.

HL7 is the standard setting organization for exchange of patient health information. Last month, HL7 accepted ASCO's request for a new document template for cancer data. This allows ASCO to proceed with the design of a document that will be voted upon by the HL7 community and, if accepted, become the industry standard for the capture and exchange of a cancer patient’s health data. Because this template will be built upon the HL7 Common Data Architecture (CDA) model, it will allow data that is stored in XML format to be imported. This will enrich the number of identifiable sources of data, such as pathology and imaging reports or patient-reported data. What will be required is that each organization identifies what types of information it wishes to collect and share that data in XML format. Already, the College of American Pathologists is developing digital models for pathology reports.

This document can drive clinical decision support and improve cancer patient survivorship. For example, if the document records that the patient is on an aromatase inhibitor and the date of the last bone density test, an alert can be sent that notifies the exact date that the next bone density test will be due. Because these documents are not limited to a point in time such as the start or end of treatment, a better name than Treatment Plan and Summary documents is needed. For now, a Cancer Patient Journey document may more accurately impart the essence. Finally, how and what data are presented to a particular type of user can be custom configured to that user through graphical user interfaces so that the documents best serve the needs of that audience. As we move from a paper to a digital world, we will need to reinvent old ideas and think outside of the box, be that paper or virtual.

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Peter Paul Yu, MD, FACP, FASCO