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National Comprehensive Cancer Network (NCCN) Patient Advocacy Summit

Cancer patient advocates and oncologists joined together in Washington, DC in December to participate in the NCCN Patient Advocacy Summit: Value Tools for Patients. Rachel, our Education & Outreach Coordinator attended the conference with a patient advocate grant provided by NCCN.  She shares themes of the day here.

“A value tool for patients is a dynamic system, process, or device that assists patients in articulating their personal preferences and goals with regard to their medical condition, treatment, and related decision-making. These tools assist patients in communicating information to their providers on what is important to them, which in turn assists providers in delivering personalized care.” Value tools encompass a diverse array of resources including

  • care guidelines (e.g. treatment options)
  • educational websites (e.g. information on type of cancer patient has been diagnosed with)
  • patient surveys (e.g. measuring financial impact, satisfaction in care experience)

In the opening presentation, representatives of the Patient Advocate Foundation and NCCN provided a background on why patients, clinicians, health researchers, pharmacology, care teams and patient advocates need to work together to build tools for patients. The speakers noted there has been a paradigm shift in treating individuals with cancer, with a greater emphasis on shared decision making, but there has been a delay in understanding the patient perspective. They emphasized the lack of comprehensive tools currently available, the need to align patient preferences with changing guidelines and that tools had to reflect the dynamics of a patient’s ever-changing journey. A feedback loop in which immediate and relative feedback was used to make timely modifications was also deemed key to a successful value tool.

Two panel discussions occurred during the day, combining a mix of stakeholders including patients/survivors. When the first panel discussed gaps of value tools for patients in cancer care differing perspectives of how value was defined emerged between the patients and the clinicians.

  • Patients defined value primarily in terms of communication
    • They placed importance on having face to face time with their care team, being provided with information that alleviated ambiguity and the consideration of their quality of life
  • Clinicians focused on value in terms of financial cost
    • They also shared their understanding of the importance placed on communication, psychosocial aspects of cancer care and caregiver roles

The second panel discussion sought to understand the principles and parameters of value tools for patients in oncology. Panelists thought value tools should 1) be adaptable as treatments and/or patient’s feelings can change over time, and 2) be used to start a conversation, not to replace patient-provider interaction.

One of the panelists summed up the conference when he said everyone wants patients to do well and thrive, and that both time and information were needed to create patient-centered tools.


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