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National Comprehensive Cancer Network

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NCCN Holds Its First Global Roundtable Event to Discuss Patient Advocacy Engagement

By Caitlin Donnelly, Business Insights Specialist, NCCN

The National Comprehensive Cancer Network® (NCCN®) hosted its inaugural NCCN Global Patient Advocacy Engagement Roundtable on Friday, 8 September 2017, in Madrid, Spain. This multi-stakeholder Global Roundtable assembled patient advocates, physicians, and policy experts to discuss best practices in global patient advocacy efforts to ensure that patients are involved at all levels of health care decision-making.

Moderated by Robert W. Carlson, MD, Chief Executive Officer, NCCN (pictured below, far right), the following panelists participated in the deliberation (pictured left to right):

  • Natacha Bolaños, Cancer Rehabilitation Specialist, Atención al Paciente y Relaciones Institucionales
  • Jan Geissler, Chair of the Futures Team, European Patients' Academy (EUPATI), Founder and Chief Executive Officer,  Patvocates, and Co-Founder, CML Advocates Network
  • William J. Gradishar, MD, Betsy Bramsen Professor of Breast Oncology, Robert H. Lurie Comprehensive Cancer Center of Northwestern University; Chair, NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) Panel for Breast Cancer; Member, NCCN Guidelines® Panel for Breast Cancer Risk Reduction
  • Agata Polińska, Vice President & Member of the Management Board, ALIVIA - FUNDACJA ONKOLOGICZNA
  • Vlad Voiculescu, Board Member, Romanian Health Observatory; Former Minister of Health, Romania; and Board Member, ARIL – the Romanian Association Against Leukemia

The panel discussed variations in patient advocacy efforts and patient access to quality cancer care. When understanding the origin of patient advocacy efforts in Europe, panelists described the complexity of geographic differences, such as Eastern Europe and Western Europe, and variation in reimbursement structures and access due to resource constraints and limitations as directed by Health Technology Assessment (HTA) systems. Moreover, panelists debated whether patient advocacy efforts should be addressed at a local level – by country for example – or through consolidated efforts spanning Europe. 

Mr. Geissler stressed the importance of working collaboratively with other patient advocates, providing education, and ensuring access to information. The organization of which he is a part, the European Patients' Academy (EUPATI), provides training to patient advocates to ensure that they are prepared when addressing policy decision-makers and are, therefore, able to lend strength to the their organization's requests and goals.

A patient advocate and former policy-maker in Romania, Mr. Voiculescu provided a unique perspective.  He re-emphasized the use of education and data to increase the power of the patient voice from a government perspective, as well as the need for increased transparency from all stakeholders in health care.

Ms. Polińska agreed that there is indeed a need for increased transparency when describing the lack of clarity in health care decision-making in Poland, particularly in regards to reimbursement policies. She also noted the lack of cohesion and need for greater collaboration among various patient advocacy groups through the prioritization of goals that address achievable solutions for these complex challenges.

Dr. Gradishar, a U.S. medical oncologist, shared his own experience with patient advocacy efforts, and the varying levels of advocacy in which physicians can play a part – from assisting an individual patient in decision-making to physician groups collaborating with advocacy groups when addressing governing and regulatory groups.

Spain has endured an evolution in patient advocacy, according to Ms. Bolaños, beginning when efforts were prohibited until the 1970s and the significant advances to place patients and patient advocates in a position to be a part of key decision-making discussions today. She emphasized that a national alignment of priorities and collaboration across groups and stakeholders were necessary to achieve such a feat.

Following the discussion, the audience had the opportunity to ask questions of the panel members. There was commentary on the flourishing patient advocacy culture in the United Kingdom and its efforts to combat strict policy and reimbursement protocols. Additionally, attendees shared personal anecdotes regarding the growing advocacy presence in Poland and its battle against the stigma surrounding cancer diagnosis.

Overall, the panel touched on common solutions despite varying characteristics of patient advocacy efforts within their respective countries. Key takeaways from the session include the importance of education and data acquisition to present evidence-based messages to policymakers, increased collaboration to combat advocacy fragmentation, and the need for prioritization of goals to combat numerous and complex challenges that patients with cancer experience throughout the cancer care continuum.

NCCN Global Roundtables

Discussion across multiple stakeholders is vital to understanding the current state of oncology care, identifying gaps, and enacting meaningful change for the future. NCCN understands this importance, particularly when working across national lines and in a truly comprehensive, international capacity. In order to advance its mission and vision, NCCN will host global roundtables of experts across multi-discipline institutions on various topics relevant to advancing high quality, global cancer care.

NCCN Global Program

The global influence and demand for the NCCN Guidelines is ever increasing. Today, nearly half of the more than 1,000,000 registered users of the NCCN Guidelines on NCCN.org report that they live outside the United States. In order to help clinicians and patients with cancer outside the United States, NCCN strives to identify programming and execute on opportunities that have global impact. The rapid expansion of the NCCN Global Program is a reflection of this effort. Last year, NCCN translated 39 NCCN Guidelines into seven languages. Indeed more than 140 translated NCCN Guidelines are currently available on NCCN.org. Moreover, NCCN is actively processing 16 regional adaptations, and the NCCN Framework for Resource Stratification of NCCN Guidelines (NCCN Framework™) which guides evidence-based adaptation to available clinical treatment resources, is available for 16 NCCN Guidelines. The goal of the NCCN Framework™ is to define appropriate treatment pathways based on available resources—Basic, Core, Enhanced, and NCCN Guidelines—and deliver a tool for health care providers to identify treatment options that will provide the best possible outcomes given specific resource constraints.

For more information about the NCCN Global Program and the NCCN Global Roundtables, please contact Jorge Bacigalupo at bacigalupo@nccn.org.