Patient Safety Work Product – Privileged and Confidential Patient Safety and Quality Improvement Act of 2005 (42 U.S.C. 299b-21 to 26), the Patient Safety and Quality Improvement final rule (42 C.F.R. §3.102(c)(2)(i)) Registrar - Interview Guide After obtaining the staff member’s verbal consent, the interviewer will thank them for his or her time and provide a brief introduction to the project. Thank you for taking the time to talk with me today. I am interested in learning more about your experiences so that we can improve breast cancer screening and care. There are no right or wrong answers. I would just like to hear about your experiences and suggestions for improvements. If any questions make you feel uncomfortable and you do not wish to answer, you may skip them and go on to the next question. You may also choose to stop participating at any time during the interview. Your answers will be held in the strictest of confidence and will only be seen by myself and authorized research staff. Most importantly, your participation in this study will not in any way affect your employment. This interview guide is intended to steer the conversation, however the discussion will direct how these questions are asked and the order of questions may change based on the interviewee’s answers. Registrar 1. What is your role, describe how you are typically involved with breast cancer patients 1.1. Tumor Registry 1.2. Do you have a tumor registry 1.3. Does it accurately and completely collect data on adjuvant therapy, biopsies, etc.? 1.4. Does your tumor registry actively pursue information on treatment when patients are referred or self-refer to another institution for adjuvant therapy? If yes, is this done mainly through relationships with specific referral institutions or is it more comprehensive? 1.5. What software does your registry use? 1.6. How does your registry define Date of Diagnosis versus your institution/hospital staff? 1.7. How do you (and other registrars) complete fields where data is unknown, or unavailable ? How do you report this (unknown/unavailable) data to other entities. For example- when reporting to the National Cancer Database if data is missing for radiation – how do they count it?- need to ask Clarissa Moholick for advice on wording 2. How do you receive information regarding newly diagnosed breast cancer? 2.1. What information do you receive and from where / whom? 2.2. Who typically provides you the information? 2.3. Do you work closely with a specific individual or specific role to gain information (case manager, navigator, nurse, other?) 3. How do you receive updated information regarding breast cancer patients – what and from where? Do you interact with medical oncology, urology, gynecology, general practice, other? This project has been made possible by generous support from the Susan G. Komen for the Cure Foundation 1 Patient Safety Work Product – Privileged and Confidential Patient Safety and Quality Improvement Act of 2005 (42 U.S.C. 299b-21 to 26), the Patient Safety and Quality Improvement final rule (42 C.F.R. §3.102(c)(2)(i)) Registrar 4. How do you track a patient who receives care at your institution and others at the same time? 4.1. Do you have relationships with registrars at other institutions? How do you communicate with them and how often? 5. What do you do when a patient is diagnosed with breast cancer at your institution but does not receive any other care at your institution? 6. What are the standards you follow in defining breast cancer data: date of diagnosis, other 7. How is patient interacted with? What is the Patient’s role? What is the impact of the “cancer registry” on the patient? 8. Who is involved or informed and why? Who should be involved? 9. What information is required and why? What is the source of the info (system, paper, etc)? 10. Breast Cancer Registry What is working well? Why do you think it works? How do you know it works (metrics, tracking methods, patient feedback, questionnaires)? What could be done better? What are the challenges? Why? (delays, breakdowns) Effective – Measured by compliance with guidelines in using appropriate therapies, procedures, diagnostics and pharmacogenomics for patient subgroups. Timely - specifically timing, sequencing, duration Safety – adverse events, errors, etc Efficient – Measured by use of resources and duration of care cycle. Includes: cost of care, RVUs, and time duration of care Patient Centered – patient interactions, adherence to care plans and satisfaction with care Utility / Usability - adoption and acceptance of care process by institution and patients Equitable – consistency of care protocols regardless of insurance, sex, race, culture, religion, economic status, education level This project has been made possible by generous support from the Susan G. Komen for the Cure Foundation 2