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Joan S. McClure

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Joan S. McClure

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Joan S. McClure

Recently, someone I met—an educated, reasonably intelligent, otherwise very personable man—told me he truly believes that the “cancer industry” is a big con. He said that cancer will never be cured because it is too profitable to all involved. Further, he thinks that, although I “apparently believe in” what I do, my job—supervising the development of NCCN's clinical information—is loathsome. My first reaction was shock that someone I actually knew thought like this, but the conversation forced me to think about and evaluate what I think about cancer and its treatment. This list is what I have come to believe in the past 20 years of working in and around oncology: 1. CANCER IS BAD. I wish it didn't exist. If I could make it disappear today, I would, even if that meant I had to be a dentist or wash windows in high rises for a living. I suspect most oncologists feel the same way. 2. If a “cure” were suddenly invented, I believe it would be immediately available. I know that when important new data are released, we immediately incorporate those data into guidelines, regardless of the financial impact whether positive or negative. 3. Many in the cancer community do have vested interests in cancer treatment—the pharmaceutical industry, payors, organized medicine, and clinicians. These people and companies are dealing with complex, interrelated, and sometimes competing issues of cancer economics. Within each of these industries, there are dedicated individuals trying to solve these problems. 4. Most of the people personally involved in oncology...
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Joan S. McClure

As society moves toward requiring greater accountability for medical practice, clinical practice guidelines based on expert evaluation of relevant data have received greater attention as a potential tool for measuring quality. However, because using guidelines in quality measurement is relatively new, little exploration has occurred regarding what it means to actually “follow” a guideline. This is particularly concerning in an environment in which adhering to recommendations or not might have consequences for patient referrals or financial incentives. Guidelines are designed to assist the clinician in making appropriate decisions about the patients' care.1 A good guideline provides a range of appropriate options—but only appropriate options—that a clinician can choose among for individual treatment decisions. During guidelines development, available evidence is considered and used as the foundation for recommendations, with high level evidence preferred. When high level evidence is not available, guidelines developers use lower level evidence, including phase II studies and retrospective analysis. Experts evaluate the evidence available at the time and make recommendations expecting that, over time, new data will drive changes in the guidelines.2 Guidelines developers consider key decisions that must be made in providing appropriate care. They cannot, however, address every possible situation that might arise. In developing the NCCN Clinical Practice Guidelines in Oncology™, for example, panel members invoke the “5% rule”: if a situation will probably not be encountered in more than 5% of the patient population under consideration, that situation is not addressed in the guidelines. This strategy limits undue complexity and emphasizes that, even...
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Joan S. McClure

In the past few months I have had the privilege of traveling to Japan, the United Arab Emirates, and China with groups of physicians presenting NCCN Clinical Practice Guidelines in Oncology. One particularly rewarding aspect of these experiences has been recognizing how similar the management of cancer is in these diverse areas of the world. Physicians in all areas of the world are reviewing the same literature so that, with minor changes to account for regulatory availability of agents, access to specific technologies, and metabolic and genetic differences among populations, the treatments for common cancers are very much the same. Especially gratifying is seeing the dedication that physicians in all parts of the world show to their patients.These travels have also illustrated a few significant differences, however, one of which is how physicians in different cultures talk about end of life issues with patients who have poor prognoses. In this area, when at its best, American medicine shines. In the United States, a continuum of care is becoming the “norm.” In this continuum, tumor-directed therapy continues throughout most of the course of the disease, even as its intent changes from potentially curative to palliative. Similarly, symptom management begins at diagnosis and becomes a greater focus when disease progresses. Patients, doctors, and nurses engage in ongoing conversations about both treatments and the changing goals of treatment.Initially, the goal is often to cure the disease or to extend life as long as possible. During this period, fighting the cancer is...
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Joan S. McClure

I recently read a news story from a 1996 issue of JNCI (J Natl Cancer Inst 1996; 88:488–490) that discussed the debut of a then-new product: the NCCN Clinical Practice Guidelines in Oncology. That news story cited the main challenges facing the program as 1) integrating the guidelines into practice and 2) collecting data and evaluating the guidelines' impact on practice and patient outcomes. A third challenge was gaining employer and payor acceptance. As we approach the NCCN's 13th Annual Conference, it's interesting to see where we are in facing these 3 challenges and looking at the additional challenges that have arisen in the intervening years. Looking back, I think these expectations were right on target. What the writer did not foresee was the degree to which electronic methods of communication and informatics initiatives would change how clinical information is distributed and used. At first, the NCCN guidelines were published only as paper-based proceedings of our annual meeting, with only the guidelines presented at the meeting published in a given year. Now the original 7 guidelines have been updated (at least annually and usually more often) for 13 years. In addition, they have been joined by more than 35 additional guidelines, also aggressively updated, and all published continuously on the Internet. The ease of Web publication has certainly changed expectations, with the anticipation that standard-changing new data can and will be incorporated into guidelines in almost real time. Similarly, newer derivatives of the guidelines, such as the NCCN Drugs and...
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Joan S. McClure

A presenter at a recent conference had a wonderful slide, a photograph of a street sign that said, “Dog owners: You are required to clean up after your dog. Dogs: Woof, ruff, grrrr, good dog!” The point of the slide, the presenter noted, is that it highlights the need to use the right language for the audience. This is an important philosophy in oncology, and it is especially important at NCCN. We develop clinical content in a number of formats, each for a different primary audience. NCCN Clinical Practice Guidelines in Oncology are targeted to the clinical professional and written in medical terminology. Additionally, a number of the guidelines are being translated into Chinese, Japanese, Spanish, and other languages to serve oncologists in other parts of the world. NCCN is also developing a set of standard orders templates that provide explicit information about drug regimens named in the guidelines. These are drafted by oncology pharmacists and reviewed by both physicians and nurses to ensure that the language used in them is both accurate and understandable to those audiences. But clinicians are not our only audience. A number of the guidelines are “translated” into more patient-friendly language in a cooperative effort with American Cancer Society to help more medically sophisticated patients (the literacy rate is quite high) understand the technical clinical decisions that drive their care. Guidelines are also translated into the NCCN Drugs and Biologics Compendium, which includes an alphabetical listing of all agents discussed in our guidelines to guide...
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Joan S. McClure

I find it difficult to know where to start in eulogizing Rodger. He was both a brilliant colleague and a very good friend. He was the moving force for orchestrating the development of the National Comprehensive Cancer Network (NCCN), and he orchestrated that development in ways that were collegial and knowledgeable and always from the perspective of ensuring high-quality care for patients. He will certainly be missed by his family and friends, and from the NCCN perspective, he is largely responsible for what the organization has become. In the early years, the NCCN was just a handful of cancer centers banding together to try to keep the determination of appropriate care for cancer patients in the hands of physicians. Rodger had the vision to see that developing guidelines to document the care given at academic cancer centers could help physicians retain the ability to designate appropriate care. He pulled panels together with his ability to look at the big picture, his lively curiosity and quick understanding, and his force of will and considerable charm. He had a special talent for knowing when to talk and when to listen and how to ask questions that put discussion into context. As what he called a “hardhat oncologist,” he earned the respect of many of the “stars” of the oncology world and he was able to bring multidisciplinary panels together and help them reach consensus. When in the guidelines' infancy it was not at all clear that competing centers could agree on how...
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Abdul Rahman Jazieh, Joan S. McClure and Robert W. Carlson