Appendix C

Goals and Recommendations from the Consensus Study Report Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis (2013)

The goals and recommendations of the 2013 IOM consensus study report Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis include (IOM, 2013a):

Recommendation 1: Engaged Patients

Goal: The cancer care team should provide patients and their families with understandable information on cancer prognosis, treatment benefits and harms, palliative care, psychosocial support, and estimates of the total and out-of-pocket costs of cancer care.

To accomplish this:

• The National Cancer Institute, the Centers for Medicare & Medicaid Services, the Patient-Centered Outcomes Research Institute, as well as patient advocacy organizations, professional organizations, and other public and private stakeholders should improve the development of this information and decision aids and make them available through print, electronic, and social media.
• Professional educational programs for members of the cancer care team should provide comprehensive and formal training in communication.
• The cancer care team should communicate and personalize this information for their patients at key decision points along the continuum of cancer care, using decision aids when available.

• The cancer care team should collaborate with their patients to develop a care plan that reflects their patients’ needs, values, and preferences, and considers palliative care needs and psychosocial support across the cancer care continuum.
• The Centers for Medicare & Medicaid Services and other payers should design, implement, and evaluate innovative payment models that incentivize the cancer care team to discuss this information with their patients and document their discussions in each patient’s care plan.

Recommendation 2: Engaged Patients

Goal: In the setting of advanced cancer, the cancer care team should provide patients with end-of-life care consistent with their needs, values, and preferences.

To accomplish this:

• Professional educational programs for members of the cancer care team should provide comprehensive and formal training in end-of-life communication.
• The cancer care team should revisit and implement their patients’ advance care plans.
• The cancer care team should place a primary emphasis on providing cancer patients with palliative care, psychosocial support, and timely referral to hospice care for end-of-life care.
• The Centers for Medicare & Medicaid Services and other payers should design, implement, and evaluate innovative payment models that incentivize the cancer care team to counsel their patients about advance care planning and timely referral to hospice care for end-of-life care.

Recommendation 3: An Adequately Staffed, Trained, and Coordinated Workforce

Goal: Members of the cancer care team should coordinate with each other and with primary/geriatrics and specialist care teams to implement patients’ care plans and deliver comprehensive, efficient, and patient-centered care.

To accomplish this:

• Federal and state legislative and regulatory bodies should eliminate reimbursement and scope-of-practice barriers to team-based care.
• Academic institutions and professional societies should develop interprofessional education programs to train the workforce in team-based cancer care and promote coordination with primary/geriatrics and specialist care teams.

• Congress should fund the National Workforce Commission, which should take into account the aging population, the increasing incidence of cancer, and the complexity of cancer care, when planning for national workforce needs.

Recommendation 4: An Adequately Staffed, Trained, and Coordinated Workforce

Goal: All individuals caring for cancer patients should have appropriate core competencies.

To accomplish this:

• Professional organizations that represent clinicians who care for patients with cancer should define cancer core competencies for their memberships.
• Cancer care delivery organizations should require that the members of the cancer care team have the necessary competencies to deliver high-quality cancer care, as demonstrated through training, certification, or credentials.
• Organizations responsible for accreditation, certification, and training of non-oncology clinicians should promote the development of relevant core competencies across the cancer care continuum.
• The U.S. Department of Health and Human Services and other funders should fund demonstration projects to train family caregivers and direct care workers in relevant core competencies related to caring for cancer patients.

Recommendation 5: Evidence-Based Cancer Care

Goal: Expand the breadth of data collected on cancer interventions for older adults and individuals with multiple comorbid conditions.

To accomplish this:

• The National Cancer Institute, the Agency for Healthcare Research and Quality, the Patient-Centered Outcomes Research Institute, and other comparative effectiveness research funders should require researchers evaluating the role of standard and novel interventions and technologies used in cancer care to include a plan to study a population that mirrors the age distribution and health risk profile of patients with the disease.
• Congress should amend patent law to provide patent extensions of up to 6 months for companies that conduct clinical trials of new cancer treatments in older adults or patients with multiple comorbidities.

Recommendation 6: Evidence-Based Cancer Care

Goal: Expand the depth of data available for assessing interventions.

To accomplish this:

• The National Cancer Institute should build on ongoing efforts and work with other federal agencies, the Patient-Centered Outcomes Research Institute, clinical and health services researchers, clinicians, and patients to develop a common set of data elements that captures patient-reported outcomes, relevant patient characteristics, and health behaviors that researchers should collect from randomized clinical trials and observational studies.

Recommendation 7: A Learning Health Care Information Technology System for Cancer

Goal: Develop an ethically sound learning health care information technology system for cancer that enables real-time analysis of data from cancer patients in a variety of care settings.

To accomplish this:

• Professional organizations should design and implement the digital infrastructure and analytics necessary to enable continuous learning in cancer care.
• The U.S. Department of Health and Human Services should support the development and integration of a learning health care information technology system for cancer.
• The Centers for Medicare & Medicaid Services and other payers should create incentives for clinicians to participate in this learning health care system for cancer, as it develops.

Recommendation 8: Quality Measurement

Goal: Develop a national quality reporting program for cancer care as part of a learning health care system.

To accomplish this, the U.S. Department of Health and Human Services should work with professional societies to:

• Create and implement a formal long-term strategy for publicly reporting quality measures for cancer care that leverages existing efforts.
• Prioritize, fund, and direct the development of meaningful quality measures for cancer care with a focus on outcome measures and with

performance targets for use in publicly reporting the performance of institutions, practices, and individual clinicians.

• Implement a coordinated, transparent reporting infrastructure that meets the needs of all stakeholders, including patients, and is integrated into a learning health care system.

Recommendation 9: Accessible, Affordable Cancer Care

Goal: Reduce disparities in access to cancer care for vulnerable and underserved populations.

To accomplish this, the U.S. Department of Health and Human Services should:

• Develop a national strategy that leverages existing efforts by public and private organizations.
• Support the development of innovative programs.
• Identify and disseminate effective community interventions.
• Provide ongoing support to successful existing community interventions.

Recommendation 10: Accessible, Affordable Cancer Care

Goal: Improve the affordability of cancer care by leveraging existing efforts to reform payment and eliminate waste.

To accomplish this:

• Professional societies should identify and publicly disseminate evidence-based information about cancer care practices that are unnecessary or where the harm may outweigh the benefits.
• The Centers for Medicare & Medicaid Services and other payers should develop payment policies that reflect the evidence-based findings of the professional societies.
• The Centers for Medicare & Medicaid Services and other payers should design and evaluate new payment models that incentivize the cancer care team to provide care that is based on the best available evidence and aligns with their patients’ needs, values, and preferences.
• If evaluations of specific payment models demonstrate increased quality and affordability, the Centers for Medicare & Medicaid Services and other payers should rapidly transition from traditional fee-for-service reimbursements to new payment models.

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