President’s Desk

April 2007
Fostering patient outreach

Thomas M. Sodeman, MD

The College recently launched a new patient Web site, MyBiopsy.org. Twenty information sheets on specific types of cancer and cancer-related conditions were posted in December.

Each patient information page targets a specific type of cancer or cancer-related condition that is covered in a CAP cancer protocol. The condition is defined, characteristics of the patient population are described, and signs and symptoms are discussed. The template covers how the pathologist makes a diagnosis, features a glossary of terms related to that condition, and describes common treatment alternatives. Side-by-side normal and abnormal images enable the patient to see exactly what the pathologist sees. A section titled “What kinds of questions should I ask my doctors?” helps formulate inquiries about side effects, second opinions, and the likelihood of full remission. Links to further resources, such as government sites listing clinical trials, the American Cancer Society site, and y-me.org, are also included. They are excellent.

Modern patients are enlightened consumers of health care; they want to understand the nature of their conditions and participate fully in their treatment. Patients often want to know how their diagnosis was made and to learn more about treatment alternatives. Yet many who are well acquainted with their oncologists, radiologists, and surgeons do not realize there is a fourth physician on their team. A low profile for pathology is a disservice to these patients, who have the right to know that diagnoses “from the lab” are made by a physician who is fully qualified to evaluate their biopsies, provide a diagnosis, and consult with their clinicians on next steps.

Our strategic plan calls for initiatives that will establish the College as the chief source of patient information on issues related to pathology. As part of that directive, we seek to enhance the understanding of our role in patient care. It was just two years ago that I sat in on a meeting of the Public Affairs Committee. We talked about the fact that anatomic pathology had nothing comparable to the excellent patient information sheets in clinical pathology provided through Lab Tests Online. (The College is a participant in Lab Tests Online, a collaborative effort of the clinical laboratory community organized by the American Association for Clinical Chemistry.) The committee felt that anatomic pathology patients should have something in writing about the findings that they can take home, a document that explains their results, puts them in context, introduces the vocabulary, and anticipates their concerns. Though some larger laboratories provide anatomic pathology patient information brochures, materials of this kind are not typically available to pathologists who practice in smaller laboratories.

We applied for the patient site URL right then and there. A productive partnership between the Public Affairs Committee and our scientific committees ensued. The public affairs group selected the diagnoses to be featured, designed a template, and partnered with the Cancer Committee, the Hematology Committee, and the Council on Scientific Affairs to develop content. Public Affairs Committee chair Melinda Moore Lewis, MD, tells me that the support from our scientific resource committees was terrific. These committees, along with the Council on Membership and Professional Development, reviewed the patient information sheets, making suggestions for additional information and refining what had been drafted.

The patient information materials dovetail with other CAP initiatives to improve the usefulness of the pathology report and strengthen understanding of the pathologist’s role. At CAP ’05, eight months after that Public Affairs Committee meeting, Education Committee chair Elizabeth Hammond, MD, coordinated a daylong workshop on clarity and completeness in pathology reports. The response to that workshop prompted the CAP Board of Governors to appoint an ad hoc committee on pathology report standardization, which is developing templates for review by our scientific resource committees. We also continue to sponsor MyHealthTestReminder.org, through which patients can arrange for an e-mail prompting them to schedule routine screening tests and blood donations. Our spokespersons network of more than 200 pathologists will now also encourage patients to access MyBiopsy.org when they give talks and interviews for electronic and print media.

The patient information sheets are available at no cost as a benefit of membership in the College. Each is posted in PDF format under the Reference Resources and Publications tab on the CAP website . Though patients can also download copies directly from MyBiopsy.org, we first need to make them aware that they exist. Individual pathologists will play a key role in raising public awareness of the site by promoting it within the medical community. When pathologists attach an information sheet to the pathology report (perhaps with a note to say they are available to talk to patients), they build ties to colleagues as well.

Committees that create and refine tools to enhance the quality of medical care are part of the CAP tradition: We would not be who we are without them. We take pride in this work, as well we should—it represents many volunteer hours. The Public Affairs Committee will continue to develop patient information pieces; seven more are planned for this year. From there, it is up to our members to encourage clinicians to make them part of the materials provided routinely to patients.

Public education efforts of this kind are as useful as we make them. Every time an anatomic pathologist shares one of these patient information sheets, our role on the medical team becomes clearer and our availability to patients and colleagues becomes more apparent. Patient outreach serves our patients, our colleagues, and our specialty.