New Adaptations of the NCCN Guidelines for Colon and Rectal Cancers Available

NCCN recently posted Latin American editions of the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Colon and Rectal Cancers in both Latin American Spanish and Brazilian Portuguese. These adaptations are the result of NCCN’s inaugural International Day held during the NCCN 18th Annual Conference: Advancing the Standard of Cancer Care on March 17, 2013. More than 20 physicians from across Latin America came to Hollywood, Florida, to meet with NCCN Guidelines Panel members and staff to discuss the consideration of Latin American adaptations of the NCCN Guidelines for Colon and Rectal Cancers necessary to allow for effective local utilization of the NCCN Guidelines.

Adaptations of NCCN Guidelines are available for use in Asia, China, Latin America, the Middle East and North Africa region, and the Republic of South Korea. Additionally, translations of NCCN Guidelines are available in Brazilian Portuguese, Chinese, Japanese, Latin American Spanish, and South Korean. To access these resources, or to learn more about NCCN international initiatives, please visit

If you would like to learn more about regional adaptations of the NCCN Guidelines or other international programming opportunities, please contact Jon Larsen at

Coming Soon! NCCN Patient and Caregiver Resources on

NCCN will soon launch the NCCN Patient and Caregiver Resources section of NCCN. org. This new section of will replace, the current NCCN Web site devoted to patients, and will feature new tools and resources to help people with cancer and their caregivers navigate cancer diagnoses, treatment, and survivorship.

NCCN Patient and Caregiver Resources will house the library of NCCN Guidelines for Patients, which are currently available for 12 different cancer types, and will feature a new, comprehensive patient glossary that includes terms from each of the published NCCN Guidelines for Patients, and a searchable list of advocacy and support groups, and patient and payment assistance programs. Patients will also be able to access expert articles and tools, such as a downloadable version of the NCCN Distress Thermometer, to prepare for conversations with their treatment teams. Further, users of NCCN Patient and Caregiver Resources on will have the ability to search for nearby NCCN Member Institutions, as well as actively enrolling clinical trials.

Users of the site will be able to register to receive updates from NCCN when new and updated NCCN Guidelines for Patients are published, as well as when new resources are made available.

NCCN Academy Explores Impact of New Health Insurance Marketplaces and Defining Quality in Oncology

On July 10-11, 2013, NCCN hosted the NCCN Academy for Excellence & Leadership in Oncology School of Pharmaceutical & Biotech Business at the National Press Club in Washington, DC. The 2-day event was moderated by Clifford Goodman, PhD, of the Lewin Group, and Robert W. Carlson, MD, Chief Executive Officer of NCCN. NCCN Academy provides an educational forum for pharmaceutical and biotech professionals to participate in and observe interactions with key stakeholders surrounding key business, policy, coverage, reimbursement, informational, and operational issues in oncology, while gathering valuable insights into developing effective strategies for navigating the various constituencies involved in cancer care.

The July NCCN Academy featured 5 modules covering a broad range of oncology topics, including, but not limited to, the anticipated impact the new health insurance marketplaces, created as a result of the Patient Protection and Affordable Care Act (ACA), will have on patients with cancer and the oncology community on the whole; issues regarding effective pricing of new oncology drugs, biologics, and devices; and how various stakeholders define quality oncology care. The 2-day session also included 2 Meet the Experts modules, which provided expert insights into the consideration and decision-making processes that result in the recommendations of the NCCN Guidelines and perspectives from regulatory and reimbursement experts on current trends and challenges in the oncology space.

The first module, “The Affordable Care Act—Communicating the New Normal to Patients: Who is Responsible?,” delved into how consumers, including patients with cancer, are being informed about how to make proper choices when enrolling for health insurance through the new marketplaces. Panelists noted that many who currently lack health insurance coverage are not aware that new options for coverage, through the ACA, now exist; specifically, the panel discussed a recent survey sponsored by Enroll America which indicated that 78% of uninsured Americans are unaware of the new insurance options that may be available to them through the insurance marketplaces. Clinician, patient, administrative, payer, and industry issues related to ACA implementation were also discussed. Panelists expressed the need for more information to better assist eligible consumers regarding new insurance options. Concerns were voiced regarding the actual health insurance and the level of benefits to be provided through the new insurance marketplaces, as well as the technical infrastructure to inform the public about the marketplaces, and how these factors will impact cancer care delivery.

During the second module, “Effective Pricing in a New Era: What is the Value Equation?,” panelists discussed issues surrounding the pricing of oncology drugs, biologics, and devices in a time when rapid evolution of medical technology continues and the cost of oncology care remains high. Moreover, the impact that drug costs are having on hospital formulary development was discussed. Of particular note, Leonard Saltz, MD, Chief of the Gastrointestinal Oncology Service and Head of the Colorectal Oncology Section at Memorial Sloan-Kettering Cancer Center (MSKCC), spoke about his experience at MSKCC, where a drug was kept off the hospital formulary in late 2012 because of its high price compared with the current existing treatment options available at that time. Sylvia Bartel, RPh, MHP, Vice President of Pharmacy at the Dana-Farber Cancer Institute, noted that the same drug was added to the hospital formulary in order to ensure access to the new therapy, should it be medically necessary. The panel’s discussion focused on the challenges of assessing value and managing costs, especially in light of advances in molecular testing. Members of the panel touched on multiple areas, including how outcomes data, cost, and patient needs factor in to determining what value is in oncology care. The panel also recognized regulatory compliance requirements as a driver of high costs, and the fact that many oncology drugs are not expected to go off patent until 2020-2022, when an increase in generic oncology drugs may drive costs down.

The first day was closed with the “Meet the Regulatory and Reimbursement Experts” module, during which panelists provided expert insight on issues regarding the FDA “breakthrough” designation for oncology products, evidence requirements for drug approvals, and the impact of companion diagnostics in the regulatory and reimbursement space. The panel noted the importance of collaboration between the FDA and Centers for Medicare and Medicaid Services (CMS) to establish a parallel review process in order to help increase efficiency of drug review processes. The panel also discussed the potential of improved clinical trial design to meet FDA safety and CMS coverage requirements.

Day 2 began with the module, “Meet the Experts: NCCN Guidelines Hot Topics,” moderated by Dr. Carlson. This module included perspectives on NCCN Guidelines development from NCCN Guidelines Panel Members. Discussion focused on differing types of clinical evidence considered by NCCN Guidelines Panels based on disease type and suggestions on how clinical trial design can be enhanced, particularly as new molecular targets are identified.

The final module of NCCN Academy, “Defining Quality in Oncology,” addressed the challenges of defining quality oncology care, as there are multiple existing quality programs with varying elements for measurements and reporting of quality care. The challenges of collecting and measuring quality data were explored from a variety of oncology stakeholder perspectives, including industry, payer, provider, and patient advocacy. Panelists expressed the importance of developing systems that will allow for real-time quality data collection that are translatable into practice improvement.

The next NCCN Academy will be held March 12, 2014, in Hollywood, Florida, prior to the NCCN 19th Annual Conference: Advancing the Standard of Cancer Care. For more information about the NCCN Academy for Excellence and Leadership in Oncology, School of Pharmaceutical and Biotech Business, visit

NCCN Oncology Policy Summit: Measuring Quality in Oncology - Challenges and Opportunities

On Friday, July 12, 2013, NCCN held the NCCN Oncology Policy Summit: Measuring Quality in Oncology - Challenges and Opportunities at the National Press Club in Washington, DC. Stakeholders gathered to discuss the challenges and opportunities for measuring quality care in oncology. The summit included discussion of current efforts to develop quality measures, the value of quality measures, and patient and caretaker perspectives of quality. The program, moderated by Clifford Goodman, PhD, the Lewin Group, consisted of short presentations and 3 panel discussions with audience participation.

After opening remarks from NCCN Chief Executive Officer, Robert Carlson, MD, 3 stakeholders gave brief presentations on their personal perspectives on quality in cancer care. The session, “How I Define Quality,” opened with Jennifer Malin, MD, PhD, Wellpoint, discussing what she does not consider part of quality care - too little care, the wrong care, too much care, and care that does not take into consideration the patient. Lillie D. Shockney, RN, BS, MAS, The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, spoke next about a patient’s perspective of what constitutes quality cancer care. Ms. Shockney highlighted the importance of patients having access to specialists and care teams with good communication skills, and specifically, care teams who support patient empowerment in decision-making and work to preserve the patient’s quality of life. This session concluded with remarks from Samuel M. Silver, MD, PhD, the University of Michigan Comprehensive Cancer Center, who spoke about his experiences as a physician treating patients, and becoming a person diagnosed with cancer. Recounting a patient who had been referred to him for a second opinion, Dr. Silver emphasized that, in most cases, quality care is the right diagnosis and the right treatment in the right timeframe in the right environment.

The first roundtable of the day, “Forging a Path to Quality,” was moderated by Dr. Goodman and featured 8 panelists with extensive knowledge around measuring quality in oncology. The panel comprised Stephen B. Edge, MD, Baptist Cancer Center; Kate Goodrich, MD, MHS, CMS; Bruce J. Gould, MD, Northwest Georgia Oncology Centers; Clifford A. Hudis, MD, Memorial Sloan-Kettering Cancer Center; Karl Lorenz, MD, MS, Rand Health; Barbara L. McAneny, MD, New Mexico Oncology Hematology Consultants; Margaret E. O’Kane, MHA, National Committee on Quality Assurance; and John Sprandio, MD, Delaware County Memorial Hospital. Panelists discussed existing quality measurement programs and how they are being used. The group identified several areas where improvements are needed, including, but not limited to, collection of patient-reported outcomes, better measures to gauge the patient experience, more prospective quality measurement, and development of measures beyond the basic process measures.

The afternoon portion of the summit commenced with the second roundtable, “Perspectives of Quality after a Cancer Diagnosis,” featuring Terry S. Langbaum, MAS, The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins; Liz Scott, Alex’s Lemonade Stand Foundation; Ms. Shockney; Dr. Silver; and Ellen Stovall, National Coalition for Cancer Survivorship. All panelists, who have had previous experience as either a patient or caregiver, discussed their individual experiences and what quality meant to them. Ms. Scott emphasized the importance of listening and communicating by all doctors, nurses, and staff with whom a patient and their family interacts. Panelists discussed how the overall culture of a hospital, or how a patient and his or her family is received, all contribute to defining a quality experience. Based on their shared experiences, the panel unanimously agreed that improvements are needed in measuring the patient experience and sharing feedback back with the system to improve quality.

The summit concluded with the third roundtable, “Payer, Employer, and Industry Perspectives on Quality,” which focused on public and private payer, employer, and industry viewpoints on quality and measuring quality. Panelists included Mary Bradley, Pitney Bowes, Inc.; Stephen Cha, MD, Center for Medicaid and CHIP Services; Kim Harrison, MHSA, Blue Cross Blue Shield of Michigan; Dr. Malin; W. Thomas Purcell, MD, MBA, University of Colorado Cancer Center; and Art Small, MD, Genentech. Part of the discussion focused on how payer-sponsored quality programs are tied to standard reimbursement models and new, innovative reimbursement models. Dr. Malin raised the issue of transparency in quality data and how the data can be used by patients to find the best doctors at the best prices. Dr. Cha also discussed the challenges a public program like Medicaid has in measuring quality and mentioned a significant challenge is uniform data. The panel concluded similarly to previous roundtable discussions during the summit that significant opportunity exists for improvement in measuring quality care in oncology.

A White Paper summarizing the summit, along with additional research, will be available by the end of 2013 in JNCCN—Journal of the National Comprehensive Cancer Network.

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