Narrative Themes in Grateful Patient Fundraising.

In this commentary article, I will identify and examine a variety of themes that arise in narratives written by 12 physician authors that detail their experiences with grateful patient fundraising. Grateful patient fundraising serves an important role in health care philanthropy. Donations by grateful patients offer practical benefits to society and altruistic giving can personally benefit donors and family members; however, solicitation of donations by physicians raises a number of legal and ethical issues including, concerns about equity and health information confidentiality. To prevent eroding or distorting the physician-patient relationship, physicians involved in grateful patient fundraising must adhere to ethical guidelines and recommendations.

Public Attitudes Regarding Hospitals and Physicians Encouraging Donations From Grateful Patients.

Importance: Philanthropy is an increasingly important source of support for health care institutions. There is little empirical evidence to inform ethical guidelines. Objective: To assess public attitudes regarding specific practices used by health care institutions to encourage philanthropic donations from grateful patients. Design, Setting, and Participants: Using the Ipsos KnowledgePanel, a probability-based sample representative of the US population, a survey solicited opinions from a primary cohort representing the general population and 3 supplemental cohorts (with high income, cancer, and with heart disease, respectively). Exposures: Web-based questionnaire. Main Outcomes and Measures: Descriptive analyses (with percentages weighted to make the sample demographically representative of the US population) evaluated respondents' attitudes regarding the acceptability of strategies hospitals may use to identify, solicit, and thank donors; perceptions of the effect of physicians discussing donations with their patients; and opinions regarding gift use and stewardship. Results: Of 831 individuals targeted for the general population sample, 513 (62%) completed surveys, of whom 246 (48.0%) were women and 345 (67.3%) non-Hispanic white. In the weighted sample, 47.0% (95% CI, 42.3%-51.7%) responded that physicians giving patient names to hospital fundraising staff after asking patients' permission was definitely or probably acceptable; 8.5% (95% CI, 5.7%-11.2%) endorsed referring without asking permission. Of the participants, 79.5% (95% CI, 75.6%-83.4%) reported it acceptable for physicians to talk to patients about donating if patients have brought it up; 14.2% (95% CI, 10.9%-17.6%) reported it acceptable when patients have not brought it up; 9.9% (95% CI, 7.1%-12.8%) accepted hospital development staff performing wealth screening using publicly available data to identify patients capable of large donations. Of the participants, 83.2% (95% CI, 79.5%-86.9%) agreed that physicians talking with their patients about donating may interfere with the patient-physician relationship. For a hypothetical patient who donated $1 million, 50.1% (95% CI, 45.4%-54.7%) indicated it would be acceptable for the hospital to show thanks by providing nicer hospital rooms, 26.0% (95% CI, 21.9%-30.1%) by providing expedited appointments, and 19.8% (95% CI, 16.1%-23.5%) by providing physicians' cell phone numbers. Conclusions and Relevance: In this survey study of participants drawn from the general US population, a substantial proportion did not endorse legally allowable approaches for identifying, engaging, and thanking patient-donors.

Privacy and Security Issues with Mobile Health Research Applications.

This article examines the privacy and security issues associated with mobile application-mediated health research, concentrating in particular on research conducted or participated in by independent scientists, citizen scientists, and patient researchers. Building on other articles in this issue that examine state research laws and state data protection laws as possible sources of privacy and security protections for mobile research participants, this article focuses on the lack of application of federal standards to mobile application-mediated health research. As discussed in more detail below, the voluminous and diverse data collected by some independent scientists who use mobile applications to conduct health research may be at risk for unregulated privacy and security breaches, leading to dignitary, psychological, and economic harms for which participants have few legally enforceable rights or remedies under current federal law. Federal lawmakers may wish to consider enacting new legislation that would require otherwise unregulated health data holders to implement reasonable data privacy, security, and breach notification measures.

California Takes the Lead on Data Privacy Law.

In the early 1970s, Congress considered enacting comprehensive privacy legislation, but it was unable to do so. In 1974, it passed the Privacy Act, applicable only to information in the possession of the federal government. In the intervening years, other information privacy laws enacted by Congress, such as the Health Insurance Portability and Accountability Act, have been weak and sector specific. With the explosion of information technology and the growing concerns about an absence of effective federal privacy laws, the legal focus has shifted to the states. Signaling a new direction in state data privacy and consumer protection law, the California Consumer Privacy Act establishes important rights and protections for California residents with regard to the collection, use, disclosure, and sale of their personal information. The CCPA is certain to spur similar legislation and to affect national and international businesses that collect data from California's residents. Understanding the new law is important for all data-driven industries, including health care.