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News and Press
Pushing Glass Behind the Paraffin Curtain: The Doctor’s Doctor Website
Paul K. Shitabata
Dermanities January 3, 2005; 2(4)
The laboratory is often viewed by the patient as a black box, a bewildering collection of sophisticated equipment where specimens are received and a diagnosis miraculously appears. Producing these complicated interpretations and diagnoses are many highly trained professionals: pathologists. The pathologist is a physician, an M.D., and is able to communicate with physicians at a highly technical level. For the past five years, the author has run a web site, The Doctor’s Doctor, designed to open channels of communication between pathologists and patients. It enables patients to understand their laboratory results and be able to make informed decisions regarding their medical care.
I thought pathologists only did autopsies and worked with dead people?
Pathologists hear these words in a variety of settings, sometimes spoken with derision, other times in naiveté. While other physicians may understand the role we play in the overall management of their patients, the layperson may view us as laboratory assistants to the physicians who really make the diagnosis. These roles are important; yet, there are vanishingly few if any role models of pathologists portrayed as physicians at the forefront of medicine and patient care. The reasons are varied but certainly the popular media does little to alter the image of pathologists as laboratory rats, keepers of the black box of the laboratory, or denizens of the autopsy suite. The popularity of television shows such as Quincy and CSI only serve to magnify these stereotypes.
What is the reality? The paraffin wall symbolically separates surgical pathologists from the clinician and patient. To a certain extent, it is a self-imposed wall that pathologists have created; some pathologists are content to remain behind the scenes. The stereotype of a physician entering pathology is a person who is uncomfortable with direct patient care. Like all stereotypes, this is an exaggeration and demeans the many pathologists who are willing to shatter this image. Most physicians understand the critical role of the surgical pathologist in patient care. Yet, this role is rarely, if ever, communicated to the patients. Furthermore, direct patient contact is an infrequent occurrence. Thus it is not surprising that patients, and as an extension of this, the popular media, are mired with the image of a pathologist hidden away in the dank recesses of the hospital morgue. From the day I chose pathology as a career, I was determined to not be relegated to a microscope, pushing glass. I earnestly desired to have patients understand what the pathologist could offer to them. But how could I achieve this?
My epiphany arrived in 1998 when a concerned patient and her husband visited my office. She brought her mammograms and a copy of my surgical pathology report of her breast biopsy, which I diagnosed. The husband was determined to speak with me since after researching his wife’s disease, he concluded that he needed to speak to the pathologist, since I was the one who made the diagnosis, and everything else depended upon this diagnosis. In his words, I was the most important person with whom he should discuss his wife's case. We spent the next hour dissecting my pathology report, explaining the unique pathology terminology and phrasing in lay language. I further reviewed the case with both of them by demonstrating the pathology on the microscope slide. At the end of the discussion, the grateful couple lamented on the lack of resources or publications that could help patients better understand their pathology report.
Their remarks struck a responsive chord in me. Indeed, there are many excellent websites to help a patient with general medical and surgical issues. Yet, there is a relative dearth of resources to help a patient interpret her own pathology report. How could this void be filled? The creation of the World Wide Web availed me an opportunity to share this information not only with patients but with other physician colleagues as well.
The website's primary audience is the patient. The major divisions include an overview of the role of the pathologist as well as frequently asked questions about our responsibilities. The laboratory report is broken down into component parts. A section examining recent medical news interprets it through the eyes of the pathologist, ensuring that the pathologist receives proper credit and recognition for their often overlooked role. A paid service provides an interpretation or translation of a patient's surgical pathology reports. The section on diseases comprises the majority of the site. For each disease, there is an introductory broad overview of the disease written in layperson terms. Below this is an outline of the disease divided into categories such as epidemiology, disease associations, pathogenesis, laboratory and radiological studies, clinical variants, histopathological variants, special stains, differential diagnosis, prognosis, and treatment.
As the website grew in popularity, physician interest and input became an impetus for providing abstracts of the current medical literature. While the majority of the abstracts are extracted from the pathology literature, many clinical abstracts discussing treatment options are included as well. Thus, each disease entry contains a comprehensive overview, information occasionally lacking in pathology textbooks.
This is a unique quality of the website, providing an up?to-date resource of the literature with an emphasis on pathology. I use my website as my primary reference for my daily pathology sign?outs, as a teaching tool for residents and fellows, a template for discussion during tumor board and conferences, and as a cited reference both on my pathology reports and in verbal and electronic consultations with other physicians. Nearly 25 journals are reviewed every month and abstracts of pertinent articles are placed under the appropriate disease headings. While common diseases are covered in detail, the website’s strength is providing a resource for rare diseases. For example, if one performs a disease search on the rare Rosai-Dorfman disease, the Google website will list my discussion of the disease as its first reference.
The Doctor's Doctor web site now reaches patients around the world with questions and consultations arriving from countries as diverse as India and Thailand. The web site still accepts no advertising and has remained an ardent advocate as an unbiased resource for patients and physicians to understand their pathology report and to better understand the role of the pathologist. By the end of September 2004, the website received over 4 million hits a month, generated by nearly 400,000 monthly visitors. Since its inception in 1999, nearly 10 million visitors have perused the site.
The most difficult task I face is to keep the site current with the latest abstracts from the medical literature keeping it relevant for both the patient and physician. It requires an average of one hour a day, everyday, for the past 5 years, to maintain the site. My reward is definitely not financial. Instead, it is the immense satisfaction of responding to the needs of our patients, a reluctant role for most pathologists. Hundreds of patients and physicians have written to express their gratitude in finding a site that attempts to decipher the complicated terminology of surgical pathology.
The Doctor's Doctor is a look back to a time when the pathologist was acknowledged as the expert consultant to all physicians. It is a look forward to a time when this role is extended to all patients. The paraffin wall that for so long has separated the pathologist from their patients and physicians is now beginning to melt.