Appendix

Workshop Agenda

PATIENT-CENTERED CANCER TREATMENT PLANNING: IMPROVING THE QUALITY OF ONCOLOGY CARE

The Keck Center of the National Academies 500 Fifth Street, N.W. Washington, DC 20001 Room 100

Workshop Description

The National Coalition for Cancer Survivorship and the National Cancer Policy Forum are hosting a public workshop addressing patient-centered cancer treatment planning. Discussions of the cancer care planning process are often broken down into silos that fail to bring to light the holistic approach necessary for coordinated, comprehensive cancer care. While previous Institute of Medicine (IOM) work has focused on the challenges of care planning for individuals who have completed their treatment (sometimes referred to as follow-up or survivorship care planning), this workshop will focus on cancer treatment planning for newly diagnosed cancer patients.

The workshop agenda will reflect the need to integrate the patient perspective in cancer treatment planning and will highlight some best practices in care planning that are currently being utilized by a number of practitioners. The workshop will include an overview of patient-centered care and cancer treatment planning, as well as sessions on shared decision making, communication in the cancer care setting, and patient experiences with cancer treatment. Models of treatment planning and tools to facilitate its use will also be discussed. Workshop presentations and discussions will examine changes in oncology practice that could promote patient-centeredness by having patients better understand the goals of treatment



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59 IMPROVING THE QUALITY OF ONCOLOGY CARE Appendix Workshop Agenda PATIENT-CENTERED CANCER TREATMENT PLANNING: IMPROVING THE QUALITY OF ONCOLOGY CARE The Keck Center of the National Academies 500 Fifth Street, N.W. Washington, DC 20001 Room 100 Workshop Description The National Coalition for Cancer Survivorship and the National Cancer Policy Forum are hosting a public workshop addressing patient- centered cancer treatment planning. Discussions of the cancer care plan- ning process are often broken down into silos that fail to bring to light the holistic approach necessary for coordinated, comprehensive cancer care. While previous Institute of Medicine (IOM) work has focused on the chal- lenges of care planning for individuals who have completed their treatment (sometimes referred to as follow-up or survivorship care planning), this workshop will focus on cancer treatment planning for newly diagnosed cancer patients. The workshop agenda will reflect the need to integrate the patient perspective in cancer treatment planning and will highlight some best practices in care planning that are currently being utilized by a number of practitioners. The workshop will include an overview of patient-centered care and cancer treatment planning, as well as sessions on shared decision making, communication in the cancer care setting, and patient experiences with cancer treatment. Models of treatment planning and tools to facili- tate its use will also be discussed. Workshop presentations and discussions will examine changes in oncology practice that could promote patient- centeredness by having patients better understand the goals of treatment

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60 PATIENT-CENTERED CANCER TREATMENT PLANNING through a shared decision-making process with their healthcare team from the moment of diagnosis onward. February 28, 2010 7:30 a.m. Breakfast and Registration 8:00 a.m. Welcome from the IOM National Cancer Policy Forum and National Coalition for Cancer Survivorship Hal Moses, Vanderbilt-Ingram Cancer Center, National Cancer Policy Forum Chair Tom Sellers, National Coalition for Cancer Survivorship 8:15 a.m. Session 1: Workshop Overview Betty Ferrell, City of Hope National Medical Center, Workshop Co-chair Ellen Stovall, National Coalition for Cancer Survivorship, Workshop Co-chair Patient perspective • ichard Boyajian, Dana-Farber Cancer Institute R Defining patient-centered care • arolyn Clancy, Agency for Healthcare Research and C Quality Cancer treatment planning: A means to deliver quality, patient-centered care • atricia Ganz, University of California, Los Angeles P 10:00 a.m. Break 10:15 a.m. Session 2: Theory, Research, and Context for Patient-Centered Care Moderator: Sharon Murphy, Institute of Medicine Presentations and discussions in this session will focus on how to integrate patient preferences and information on treatment options and prognosis so that patients and their care providers, through a shared decision- making process, can decide upon a care plan. Speakers

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61 APPENDIX will discuss the competencies necessary to ensure that shared decision making is a core component of cancer treatment planning. Patient perspective: Understanding patient preferences and engaging patients in decision making • essie Gruman, Center for Advancing Health J Research perspective: Are patient preferences currently incorporated in treatment decisions? • ancy Keating, Harvard Medical School and N Brigham and Women’s Hospital Decision quality • aren Sepucha, Massachusetts General Hospital and K Harvard Medical School Incorporation of comparative effectiveness research (CER) into shared decision making: Promises and challenges • heldon Greenfield, University of California, Irvine S Shared decision making in practice • effrey Peppercorn, Duke University J Discussion (30 minutes) Questions: • ow can patient preferences be assessed in the H context of medical decision making? Are patient preferences usually taken into account? • hat is the role of a patient when discussing a W treatment plan? What is the role of the care team? • hat are the barriers to incorporating patient W preferences and shared decision making in cancer treatment planning and which barriers can be modified? • hat is decision quality? How can biomedical W research findings (for example, comparative effectiveness research) be communicated to patients to inform preference-sensitive decision making? 12:30 p.m. Lunch

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62 PATIENT-CENTERED CANCER TREATMENT PLANNING 1:30 p.m. Session 3: Practice or Professional Perspectives on Communication Moderator: Anthony Back, University of Washington This session will discuss the importance of effective communication when creating a cancer treatment plan. Speakers will address patient needs and expectations regarding communication in the medical setting, as well as strategies for preparing patients to engage in these discussions. Speakers will also discuss communication issues and approaches from a variety of care team perspectives. Eliciting patient preferences and preparing patients to shape their care • herrie Kaplan, University of California, Irvine S Culturally appropriate communication and care • inda Burhansstipanov, Native American Cancer L Research Corporation Physician perspectives on communication • nthony Back, University of Washington A Oncology nurses: Leveraging an underutilized communication resource in cancer treatment planning • arie Bakitas, Dartmouth-Hitchcock Medical M Center Psychosocial provider perspectives on communication • lizabeth Clark, National Association of Social E Workers Patient navigation • ngelina Esparza, American Cancer Society Patient A Navigator Program Discussion (30 minutes) Questions: • ow can we ensure that healthcare professionals are H prepared to engage patients and family members (including adult learners, people in distress, older adults) in cancer treatment planning discussions? How do we build in these competencies in health professional training?

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63 APPENDIX • hat matters most to patients when communicating W with members of their care team? • ow can healthcare professionals tailor H communication to individual patients’ needs? • ow can communication be improved when H patients see multiple providers or are transitioning to different treatments? How can a treatment plan facilitate this? 4:15 p.m. Break 4:30 p.m. Session 4: Patient Perspectives Moderator: Patricia Ganz, University of California, Los Angeles This panel discussion will offer an opportunity for patients and family members to describe their experience with cancer treatment and to react to workshop presentations and discussions. Panel Discussion • obert Erwin, Marti Nelson Cancer Foundation R • ark Gorman, National Coalition for Cancer M Survivorship • nne Willis, National Coalition for Cancer A Survivorship Questions: • hat is your (or your family member’s) experience W with cancer treatment? Was there a treatment plan in place? Were shared decision making and good communication a part of the process? What could have been improved? • hat aspects of a cancer treatment plan are most W important to patients? • id you find a particular presentation or discussion D particularly compelling? Were there any discussion points that you strongly agreed or disagreed with? 5:30 p.m. Adjourn, Day 1

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64 PATIENT-CENTERED CANCER TREATMENT PLANNING March 1, 2010 7:30 a.m. Breakfast and Registration 8:00 a.m. Welcome Back, Overview of Day 2 Ellen Stovall, National Coalition for Cancer Survivorship 8:15 a.m. Session 5: Models of Practice and Implementation Moderator: Thomas Smith, VCU Massey Cancer Center In this session, speakers will describe examples of care planning approaches in use that could serve as models for wider implementation. In addition, speakers and discussions will focus on how quality metrics and electronic tools can impact the implementation and effectiveness of cancer treatment planning. Models Evaluating treatment plans and summary templates in the Breast Cancer Registry Pilot • nn Partridge, Dana-Farber Cancer Institute A Lessons learned in survivorship planning • eborah Mayer, University of North Carolina D Advance care planning • homas Smith, Virginia Commonwealth University T Massey Cancer Center Chronic care model • d Wagner, MacColl Institute-Group Health E Research Institute Tools and Metrics to Facilitate Cancer Treatment Planning Electronic health records and care planning • awrence Shulman, Dana-Farber Cancer Institute L Measuring effectiveness: Quality metrics in cancer treatment planning • ussell Hoverman, Texas Oncology and US R Oncology

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65 APPENDIX Discussion (45 minutes) Questions: • ow can models of cancer treatment planning be H evaluated and disseminated to encourage broader implementation? • hat are some of the lessons from different W models of treatment planning that could improve implementation and quality of cancer treatment plans? • n what ways can electronic health records facilitate I cancer treatment planning? What electronic tools can assist the formation and discussion of a cancer treatment plan with a patient? • an quality metrics facilitate implementation C of cancer treatment planning? What metrics are important for assessing the effectiveness of cancer treatment plans? 11:30 a.m. Lunch (please pick up lunch and return for next session) 12:00 p.m. Session 6: Next Steps for Achieving Better Cancer Treatment Planning Moderator: Alison Smith, C-Change The concluding session of the workshop will provide a summary of key themes and issues that emerged from workshop discussions and presentations. Panelists and workshop participants can describe some of the lessons learned from past experiences with cancer treatment planning and have the opportunity to comment on important components of treatment planning that may improve oncology care. Discussions may also focus on policy or research needs that may encourage greater use of treatment planning in the future. Summary of Key Workshop Themes • lison Smith, C-Change A

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66 PATIENT-CENTERED CANCER TREATMENT PLANNING Panel Discussion • ichard Boyajian, Dana-Farber Cancer Institute R • obert Erwin, Marti Nelson Cancer Foundation R • ark Gorman, National Coalition for Cancer M Survivorship • lizabeth Goss, Turner & Goss LLP E • haron Murphy, Institute of Medicine S • nne Willis, National Coalition for Cancer A Survivorship Questions: • hat are the barriers to implementing cancer W treatment planning from the patient, professional, and system perspective? • hat are some potential policy opportunities in W cancer treatment planning from a federal, state, institutional, or association perspective? • hat are the research priorities for driving policy W and practice? • hat incentives could encourage greater engagement W in cancer treatment planning by patients, professionals, and healthcare institutions? 2:00 p.m. Adjourn