Dr. Lyman, who is also a member of ASCO’s Value in Cancer Care Task Force and professor of medicine/medical oncology at the University of Washington School of Medicine, provided answers to questions about what is needed in an open discussion about value in cancer care.

Question: Who needs to be the key stakeholders in a regional initiative to ensure success?


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Dr. Lyman: Major stakeholders that need to be involved in the value discussion, definitions, and initiatives include patients, caretakers, providers (including specialists and professional organizations), health systems, and payers, including CMS [Centers for Medicare and Medicaid Services]. At some point, we need to engage industry and government regulators as well as policy makers. At HICOR, we have begun to engage such a broad range of stakeholders in the region to work with us; identify the challenges that impact on all of us but, most of all, our patients; and together develop and test novel strategies for improving the quality and consistency of care while constraining the unsustainable rise in health care costs that represent a clear ‘toxicity’ as real as treatment-related complications. By identifying expensive interventions that don’t work or cause more harm than good as well as discovering and promoting things that do work and have a meaningful impact on patient’s lives, we hope to both improve the quantity and quality of survival while bending the cost down, thus improving the value of the care that cancer patients receive.

Question: Do you foresee a time when a validated “value questionnaire” would be administered to patients to ensure that the clinician and the patient are in sync with respect to outcomes?

Dr. Lyman: I do anticipate that through HICOR we will be able to come to agreement with stakeholders and eventually develop and validate such measures. It goes without saying that this is far from a trivial or easy task and it is difficult to put an actual timeline on it. Among the many issues is the need to capture the totality of clinical and financial effects of the disease and its complications as well as the total costs of diagnosing, staging, treating, and supporting patients through known effective care. Those of us that work on the clinical as well as the economic and policy sides of these discussions fully understand the complexities and challenges of this and similar efforts. Not only is it essential to come to an agreement as to what represents meaningful benefit and an appropriate balance of benefit and harms but also how to capture costs from a range of perspectives, including the patient and family, provider, institution, payer, etc, and these costs need to capture the indirect and out-of-pocket costs to patients and families that are rising at an alarming rate.

Question: I have friends with spouses who needed chemotherapy and felt abandoned when their physician left the choice of treatment up to them. What is needed to bridge that information gap to ensure a decision is truly shared?

Dr. Lyman: Critical to all that is indicated above and from a much broader perspective, this needs to start with an open and honest dialogue between the patient and provider. Just like doctors, institutions and payers differ in terms of their perspective of these issues; patients vary enormously in terms of their needs, desires, and expectations. Some patients do want to rely on the clinician’s expertise and best judgment, while others wish to share in all major decisions related to their care, and there is a broad continuum between these perspectives. The clinician must engage and assess the needs, wishes, and desires of the patient and be flexible to meet their needs and offer the level of care that is best for the whole patient. Open and honest discussion up front and continuously over the course of care is essential. Unfortunately, there is limited time for these discussions in busy offices and doctors often have limited background or training on how to discuss these issues and elicit patient preferences. ASCO and other professional organizations are committed to enhancing the education of oncologists and providing them with the necessary tools to improve communication with patients and address their needs in the optimal way.

References

  1. Mariotto AB, Yabroff R, Shao Y, Feuer EF, Brown ML. Projections of the cost of cancer care in the United States: 2010–2020. J Natl Cancer Inst. 2011;103(2):117-128.
  2. Institute of Medicine. Assessing and Improving Value in Cancer Care: Workshop Summary. Washington, DC: The National Academies Press; 2009. Available at: http://www.iom.edu/Reports/2009/Assessing-Improving-Value-Cancer-Care.aspx. Accessed June 26, 2014.
  3. ASCO.org. ASCO in Action Brief: Value in Cancer Care. Posted January 21, 2014. Available at: http://www.asco.org/advocacy/asco-action-brief-value-cancer-care. Accessed June 19, 2014.
  4. ASCO.org. ASCO Holds Leadership Summit to Address Value in Cancer Care, Cost of Cancer Drugs and Technologies. Posted January 28, 2014. http://www.asco.org/advocacy/asco-holds-leadership-summit-address-value-cancer-care-cost-cancer-drugs-and-technologies. Accessed June 19, 2014.
  5. FHCRC.org. HICOR brings together oncologists, private insurers to talk about ways to reduce financial toll on patients and payers. January 24, 2014. Available at: http://www.fhcrc.org/en/news/center-news/2014/01/cost-tackled-value-cancer-care-summit.html. Accessed June 23, 2014.
  6. FHCRC.org. Hutchinson Institute for Cancer Outcomes Research. Value in Cancer Care Initiative. Available at: http://www.fhcrc.org/en/labs/hicor/initiatives/value-in-cancer-care-initiative.html. Accessed June 25, 2014.