1. National Coalition for Cancer Survivorship Meeting, Washington DC November 13, 2014 Steven Clauser, PhD, MPA Program Director, Improving Healthcare Systems Patient Centeredness and Engagement in Cancer Care System Improvement

2. About PCORI An independent research institute authorized by Congress through the Patient Protection and Affordable Care Act. Funds comparative clinical effectiveness research (CER) that engages patients and other stakeholders throughout the research process. Seeks answers to real-world questions about what works best for patients based on their circumstances and concerns. www.pcori.org/about

3. Patient-Centered Outcomes Research (PCOR) helps people and their caregivers communicate and make better-informed healthcare decisions. PCOR: Actively engages patients and key stakeholders throughout the research process Compares important clinical management options. Evaluates the outcomes that are the most important to patients. Addresses implementation of findings in clinical care environments. What is PCOR?

4. How Patient-Centeredness Compares with Patient Engagement Patient Engagement Patients are partners in research, not just “subjects” Active and meaningful engagement between scientists, patients, and other stakeholders Community, patient, and caregiver involvement already in existence or a well- thought out plan Patient-Centeredness Does the project aim to answer questions or examine outcomes that matter to patients within the context of patient preferences? Research questions and outcomes should reflect what is important to patients and caregivers

5. Who Are Our Stakeholders? PCORI Community Patient/ Consumer Caregiver/ Family Member of Patient Clinician Patient/ Caregiver Advocacy Org Hospital/ Health System Training Institution Policy Maker Industry Payer Purchaser

6. Research Should Engage Stakeholders at Every Step Planning the study Conducting the study Disseminating study results PCORI Engagement Principles PCORI Engagement Rubric A four-part rubric developed to help guide applicants, reviewers, awardees, and program officers on ways to engage patients and families in conducting research http://www.pcori.org/assets/2014/02/PCORI-Patient-and-Family-Engagement-Rubric.pdf

7. PCORI’s National Priorities for Research Assessment of Prevention, Diagnosis, and Treatment Options Improving Healthcare Systems Communication & Dissemination Research Addressing Disparities Accelerating PCOR and Methodological Research 7

8. Evaluating the Impact of Patient-Centered Oncology Care Sarah Scholle, MPH, DPH, National Committee for Quality Assurance Washington, DC Problem Cancer patients face complex needs during active treatment and have ongoing needs for surveillance after completion of therapy. Need Treatment and surveillance have a large impact on the well-being and functioning of patients and their families. Project goal Tests a service model to increase use of evidence-based treatments, improve communication, care planning and attention to patients’ psychosocial needs. Tests and evaluates usage of the patient-centered medical home model of care for treating oncology patients. The goal is to examine whether the model improves patient experiences and quality of care, reduces events such as emergency department visits and hospital stays, and whether its adoption varies across practices. Improving Healthcare Systems, awarded May 2013

9. Evaluating the Impact of Patient-Centered Oncology Care Sample: 600 patients in 5 intervention and 15 control Patient-Centered Oncology Care practices, receiving cancer care during the 3 years prior and during the intervention Study Design (mixed mode): 1.Use quality improvement and co-learning methodologies to implement model 2.Focus groups for qualitative assessment 3.Difference-in-difference analytic design evaluating CAHPS survey for cancer and claims data to estimate the intervention effect in practices Study Outcomes: Patient experience with care, selected QOPI measures, ED visits, hospital admissions,

10. Planning the study Study idea initiated by oncologists, but quickly engaged patients to refine concept  Study Executive Committee & Advisory Panel sought out survivors, current patients, families including measurement and policy experts with lived experience  The Executive Committee for study includes a national policy expert and patient advocate who are both multiple cancer survivors  The Multi-Stakeholder Advisory Panel includes a patient advocate and health system administrator who are also cancer survivors Cancer patients and survivors kept study focus on patient-centered outcomes, such as care experiences, reduced emergency department visits, and reduced hospitalizations for side effects of cancer treatments.

11. Conducting the study Study leadership:  NCQA, NCCS (Ellen Stovall), Center for Advancing Health, ASCO, several cancer survivors, Independence BCBS Intervention  Study practices directly involve patient partners in individual clinic redesign efforts Care  The intervention focuses on patient-centered communication, care coordination, and support for psychosocial needs

12. Disseminating the study results Patients have been involved in plans for disseminating study findings to patient, stakeholder, and research audiences  This has included arranging a presentation of the study aims and design at the Cancer Leadership Council, a patient-centered forum of national advocacy organizations addressing public policy issues in cancer Patients on the Executive Team and Advisory Panel will aid in developing key messages for patients as well as identifying and writing for outlets that connect directly with patients

13. PCORI engagement principles PCORI Engagement Principles Reciprocal Relationships The roles and decision making authority of all research partner are clearly stated Co-learning Application includes plans to ensure that patient partners will understand the research provides and researchers will understand patient engagement Partnership Time and contributions of patients are valued and demonstrated in fair compensation and throughout time commitment requests Trust, Transparency, Honesty Major decisions are made inclusively, communication is open and honest, and findings are communicated in a meaningful/usable way

14. Eugene Washington PCORI Engagement Awards Provide “wrap-around” support and enhance impact of PCORI’s research initiatives Three award types: Knowledge, Training and Development Dissemination and Implementation Awards of up to $250,000 Objectives  Engage new groups not previously involved with PCORI  Develop new mechanisms for disseminating research findings  Promote “research done differently” by supporting engagement and partnering in conduct and use of CER

15. Conclusion Patient-centered oncology care is important to cancer patients and survivors Engaging cancer patients and their caregivers in research and practice is important to advancing this goal Patient-centered outcomes research can contribute by building an evidence base of health care options that can assist patients, caregivers, and others in the health care system make informed choices consistent with their needs and preferences 15

16. Have a Question? General Inquiries info@pcori.org | (202) 827-7200 Research/Programmatic Questions sciencequestions@pcori.org | (202) 627-1884 Administrative/Financial/Technical Questions pfa@pcori.org