Communication & Care Plan for Breast Cancer T reatment Creating a Tool for Patient-Centered Care

1. Communication & Care Plan for Breast Cancer Treatment Creating a Tool for Patient-Centered Care Kathy Hajopoulos, MPH UCSF Carol Franc Buck Breast Care Center October 15, 2008

2. Creating a New Patient-Centered Paradigm Harness the power of 21st century information technology to profoundly impact every stage of breast cancer care Design a system of care to address the specific needs, experiences, and values of the patient Tailor care to biology, patient preference, and clinical performance

3. What Will It Take? Convenient data input & access to critical information Tools for planning and organizing the care process Communication tools and patient resources

4. Breast Cancer Treatment Options Are Complex Diagnosis & Clinical Staging Chemo Radiation HRT Mastectomy No further Tx HRT Surgery Radiation HRT Lumpectomy No further Tx HRT No further Tx No further Tx HRT Surgery Radiation Chemo No further Tx HRT Radiation HRT No further Tx HRT No further Tx Do Nothing XRT Surgery Hormone (HRT) Chemo HRT Surgery Surgery No further Tx Radiation No further Tx Radiation Chemo

5. The Communication & Care Plan Solution Funded by the California Healthcare Foundation and the Robert Wood Johnson Project HealthDesign Initiative Enables capture of structured data from patients and providers Organizes information and displays treatment options on a calendar Integrates information about care and streamlines the delivery of services Supports a collaborative decision making process

6. Communication & Care Plan Progress Conducted patient, provider, and staff focus groups Solicited input on information needs Incorporated feedback on prototype design Flash tool used for rapid prototype development Prototype designed and built on Tolven platform Reflects requirements for timeline functionality Incorporates patients calendar with treatment calendar

7. What We Learned:Patient Focus Group Feedback Security and confidentiality important Useful if practitioners use it as well Information needs will vary: Women should be able to tailor the views to meet their needs Outcomes such as recurrence/mortality data is very emotional and should be shown only when ready Decision support tools should be a nested, but separate component Solutions needed for women without internet access or with language barriers

8. Patient-Requested Functionality Document original diagnosis, progression, post-treatment care, and second opinions Include test and lab schedules, chemo flow sheet, other drug information, radiation and other treatments Include pathology and MRI images Show continuum of care so patient can see where they are in treatment, normal findings, treatment side effects, symptom management, etc. Provide summary page of all pertinent information Offer research protocols for clinical trials, glossary, contact information, links to recommended web sites and resources Incorporate reminder system to push out messages or alerts that patients can create

9. What We Learned:Provider Focus Group Feedback Physicians unwilling to enter patient data or use an on-line tool not already integrated into the existing practice management systems or EMRs Initial patient information gathering most time consuming Data currently not easily accessible or in one format/place- frustrating Great to have visual to show overview of care plan Care coordination between providers critical

10. Provider-Requested Functionality Information on pathology, tumor size and characteristics, receptor status, etc. Ability to know if patient is following “Plan A” vs. “Plan B” after initial consult Repository of general information about decisions made Template to manage order of treatment Standard set of orders linked to electronic timeline Electronic flow sheet populated with labs, connected to EMR Connection to relevant patient educational materials Set of rules for all users for entry of information in CCP

11. COMMUNICATION & CARE PLAN PROTOTYPE

15. Project Health Design Core Components • HL7 used for underlying data structure • Open Source software platform • Built in accordance with existing standards • Developed open source timeline and calendar component • Ready to integrate with core component functions such as medication list • Future functionality could incorporate observation with calendar

16. CCP Development - Next Steps Conduct usability testing via RWJ extension: 8-10 breast cancer survivors 5-7 providers Evaluate the ease of use and perceived value of the different views of the data in the CCP calendar and timeline prototype Improve the interface based on feedback from users Create functionality by developing interfaces to: structured pathology, clinical and surgical staging; patients survey summaries; ability to automate chemotherapy and surgical orders; UCSF patient portal and EMR

17. CCP Implementation Challenges – Next Steps Integration with existing EMR systems – most data not currently in standard, structured format UCSF wants to collaborate to develop “prototype” integration Integration with scheduling and practice management systems Linkages with existing PHRs – most are currently not portable or interoperable Additional funding required to build out CCP: Integrate with existing systems, emerging tools Deployment to community based providers and clinics

18. Why Are We Doing this Work? • The current information captured (mostly through billing) does not capture data that fuels: • Quality improvement • Development, reporting of quality measures • Integration of clinical care and research • Registry reporting • Program development to serve patient needs • New diagnosis, Survivorship, Same day assessment, etc • Complementary to current EMRs, PHRs • Shared need for common data • e.g. pathology, staging, meds, outcomes

19. Related Complementary Work • Web-based surveys for intake, follow-up and Survivorship Program • BreastCancerTrials.org • Surgical staging tools • Clinical staging tools • Breast Cancer Risk Tools • Risk assessment models as web services • Patient/Physician decision aids • Screen Shots/Examples follow

20. Summary Report of On-Line Patient Intake Survey Electronic, Structured Intake: automated referrals for Psychosocial Services, Genetic Counseling, Smoking Cessation, Diet and Exercise Survivorship Program: Launched June 2008

21. BreastCancerTrials.org National Launch: October, 2008 Will use the same questions from Intake Survey A patient-centered clinical trial matching service co-developed by UCSF and NCI. After a regional pilot, will launch nationwide as a program of Quantum Leap Healthcare Collaborative

22. Health history forms Online HELP

23. New Tools for Surgical Staging Process Change: Enter data once, structured format, reuse many times

24. TRANslational Informatics System to Coordinate Emerging Biomarkers, Novel Agents And Clinical Data NCI TRANSCEND Project

25. Long Term Vision:“eCareNet” • Health Care Systems of the Future Conference: September 26-27, 2008 • Planning a Demonstration Project • IMPACT grant submitted to create “eCareNet”