Recording medical visits for people with breast cancer
Creators: name: University Of California Office Of The President
Publisher: name: University of California Office of the President
publisherIdentifier: https://ror.org/00dmfq477
publisherIdentifierScheme: ROR
Year: 2024

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. Fortunately, researchers have identified strategies that increase question-asking and improve patient recall of information. These strategies include helping patients develop a list of questions prior to major medical visits, and providing audio-recordings and/or plain language summaries of consultations. Patient support organizations, including the Cancer Resource Centers of Mendocino County, have begun to provide assistance with question-listing, audio-recording, and note-taking. As a result, patients are indeed asking more questions and recalling more of the answers they get from doctors. However, our study team recently discovered that patients, doctors, and resource center staff sometimes share question-lists, 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 treat documents created, like these, by employees of support organizations that are not legally considered “covered entities.” This policy gap creates barriers to adoption of these interventions due to concerns about potential legal conflict, loss of privacy, errors and omissions, and other risks. We propose to develop community-endorsed policies, procedures, and guidelines for the safe, legal, private, and effective storing and sharing of question-lists, audio-recordings, and notes.
 
 
 
 
 
 
 
 Questions:
 
 
 
 -Q1. How are patients, doctors, and resource center staff storing and sharing question-lists, audio-recordings, and notes, and what are the implications in terms of patient privacy, safety, quality of care and other issues?
 
 
 
 -Q2. What policies, procedures, and guidelines will productively address the community’s goals for legal, private, safe and effective storing and sharing of question-lists, audio-recordings, and notes from medical visits?
 
 
 
 
 
 
 
 To answer the study questions, we will review 432 resource center records and interview 30-50 community members, including survivors, doctors, and resource center employees. In this way we will identify positive and negative incidents associated with doctors, patients, and others storing and sharing question-lists, audio-recordings, and notes. From these incidents we will form an understanding of the risks and benefits of various storing and sharing practices. Then we will design and test community-supported policies, procedures and guidelines to maximize the positive effects and minimize the negative. We expect our guidelines to use legal and organizational best practices such as business associate agreements, certificates of confidentiality, de-identification, and license agreements, among others.
 
 
 
 
 
 
 
 The US Agency for Healthcare Research and Quality, the Mayo Clinic, and others have recognized our team’s work as innovatively patient-centered. This project will add to our track record of innovation by addressing policy issues that need to be resolved for broader adoption of question-listing, audio-recording, and note-taking. Broader adoption of these interventions will allow more patients and doctors to exchange information more effectively.
 
 
 
 
 
 
 
 Our community consists of individuals and organizations in Mendocino County with an interest in helping people with breast cancer be informed and involved in their care as they make treatment decisions. Our team has conducted three prior studies addressing our community’s desire to facilitate information exchange between patients and doctors. Our study questions respond to issues that were brought up during a pilot award in which we interviewed 34 community members. We will continue to engage community members in every aspect of this research, from refining the questions and study procedures, to collecting and analyzing data, and disseminating our findings.
 
 
 
 
 
 
 
 We are actively working with two non-profit agencies, the Cancer Support Community and Avon Foundation for Women, to disseminate our research on question-listing, audio-recording, and note-taking to resource centers around the country. We also plan to study the financial costs and benefits of this type of support, and involve insurers and other payers in testing reimbursements for these services.
 
 
 
 
 
 
 
 Publications: 
 
 
 
 The Effects of Coaching Patients to List Questions Before Visiting Cancer Specialists: Retrospective Evaluation of Visit Preparation in a Rural, Underserved Setting