PIs: Jeff Belkora, Sara O’Donnell
Contributors: Jaime King, Alan Fong, Lauren Stupar
Funders: California Breast Cancer Research Program
Project Objective: To provide community-based research with the Mendocino Cancer Resource Center evaluating decision support among rural, underserved patients, including Latinas and Native Americans, in North Coast counties of California.
Project Description: People diagnosed with breast cancer often struggle to ask questions and absorb, understand, and act upon the information they get from doctors. This is a significant problem because patients have a legal and ethical right to be as informed and involved as they want to be in their treatment decisions. Our study partner, the Cancer Resource Centers of Mendocino County (CRCMC), provides assistance with question-listing, audio-recording and note-taking for clients’ medical appointments. This assistance is associated with increased question-asking and information recall among other benefits. We have found that patients, doctors, and resource center staff sometimes share these question-lists, summary notes, and audio-recordings with other parties, usually to coordinate care or support. The problem is that current regulations are not clear about how to store and share documents created, like these, by employees of support organizations that are not legally considered “covered entities”. We propose to develop community-endorsed policies, procedures, and guidelines for the safe, legal, private and effective storing and sharing of question-lists, summary notes and audio-recordings. Our study has a participatory approach with both academic and community partners providing input during each phase of the research process. This research is being done through a partnership of the Cancer Resource Center of Mendocino County, UCSF and UC Hastings faculty, as well as recent UC Hastings graduate, Alan Fong. Our work has produced an in depth analysis of the state and federal privacy laws regarding use and storage of private medical records.