The Scope and Legal Implications of Tracking Technologies on Hospital Websites.

This Viewpoint analyzes the scope and legal implications of tracking on hospital websites, including potential HIPAA and state privacy law violations, and suggests that hospitals limit such tracking.

Widespread Third-Party Tracking On Hospital Websites Poses Privacy Risks For Patients And Legal Liability For Hospitals.

Computer code that transfers data to third parties (third-party tracking) is common across the web and is subject to few federal privacy regulations. We determined the presence of potentially privacy-compromising data transfers to third parties on a census of US nonfederal acute care hospital websites, and we used descriptive statistics and regression analyses to determine the hospital characteristics associated with a greater number of third-party data transfers. We found that third-party tracking is present on 98.6 percent of hospital websites, including transfers to large technology companies, social media companies, advertising firms, and data brokers. Hospitals in health systems, hospitals with a medical school affiliation, and hospitals serving more urban patient populations all exposed visitors to higher levels of tracking in adjusted analyses. By including third-party tracking code on their websites, hospitals are facilitating the profiling of their patients by third parties. These practices can lead to dignitary harms, which occur when third parties gain access to sensitive health information that a person would not wish to share. These practices may also lead to increased health-related advertising that targets patients, as well as to legal liability for hospitals.

Association Between Nephrologist Ownership of Dialysis Facilities and Clinical Outcomes.

Importance: Ownership of US dialysis facilities presents a financial conflict of interest for nephrologists, who may change their clinical practice to improve facility profitability. Objective: To investigate the association between nephrologist ownership of freestanding dialysis facilities and clinical outcomes. Design, Setting, and Participants: This cross-sectional study was conducted using US Renal Data System data linked to a data set of freestanding nonpediatric dialysis facility owners. Participants were a sample of all adults with fee-for-service Medicare receiving dialysis for end-stage kidney disease from January 2017 to November 2017 at included facilities. Data were analyzed from April 2020 through August 2022. Exposures: Outcomes associated with nephrologist ownership were assessed using a difference-in-differences analysis comparing the difference in outcomes between patients treated by nephrologist owners and patients treated by nonowners within facilities owned by nephrologists after accounting for differences in patient outcomes between nephrologist owners and nonowners in other facilities. Main Outcomes and Measures: Outcomes plausibly associated with nephrologist ownership were evaluated: (1) treatment volumes (missed treatments and transplant waitlist status); (2) erythropoietin-stimulating agent (ESA) use and related outcomes (anemia, defined as hemoglobin level <10 g/dL, and blood transfusions), (3) quality metrics (mortality, hospitalizations, 30-day readmissions, hemodialysis adequacy, arteriovenous fistula use, and hemodialysis catheter use for ≥3 months), and (4) home dialysis use. Results: A cohort of 251 651 patients (median [IQR] age, 66 [46-85] years; 112 054 [44.5%] women; 9765 Asian [3.9%], 86 837 Black [34.5%], and 148 617 White [59.1%]; 38 938 Hispanic [15.5%]) receiving dialysis for end-stage kidney disease were included. Patient treatment by nephrologist owners at their owned facilities was associated with a 2.4 percentage point (95% CI, 1.1-3.8 percentage points) higher probability of home dialysis, a 2.2 percentage point (95% CI, 3.6-0.7 percentage points) lower probability of receiving an ESA, and no significant difference in anemia or blood transfusions. Patient treatment by nephrologist owners at their owned facilities was not associated with differences in missed treatments, transplant waitlisting, mortality, hospitalizations, 30-day readmissions, hemodialysis adequacy, or fistula or long-term dialysis catheter use. Conclusions and Relevance: This cross-sectional cohort study found that nephrologist ownership was associated with increased home dialysis use, decreased ESA use, and no change in anemia or blood transfusions.

Historical trends in health care-related financial holdings among members of Congress.

BACKGROUND: Revelations that some members of Congress, including members of key health care committees, hold substantial personal investments in the health care industry have raised concerns about lawmakers' financial conflicts of interest (COI) and their potential impact on health care legislation and oversight. AIMS: 1) To assess historical trends in both the number of legislators holding health care-related assets and the value and composition of those assets. 2) To compare the financial holdings of members of health care-focused committees and subcommittees to those of other members of the House and Senate. METHODS: We analyzed 11 years of personal financial disclosures by all members of the House and Senate. For each year, we calculated the percentage of members holding a health care-related asset (overall, by party, and by committee); the total value of all assets and health care-related assets held; the mean and median values of assets held per member; and the share of asset values attributable to 9 health asset categories. FINDINGS: During the study period, over a third of all members of Congress held health care-related assets. These assets were often substantial, with a median total value per member of over $43,000. Members of health care-focused committees and subcommittees in the House and Senate did not hold health care-related assets at a higher rate than other members of their respective chambers. CONCLUSIONS: These findings suggest that lawmakers' health care-related COI warrant the same level of attention that has been paid to the COI of other actors in the health care system.

Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation.

Recent debates within the autism advocacy community have raised difficult questions about who can credibly act as a representative of a particular population and what responsibilities that role entails. We attempt to answer these questions by defending a set of evaluative criteria that can be used to assess the legitimacy of advocacy organizations and other nonelectoral representatives. With these criteria in hand, we identify a form of misrepresentation common but not unique to autism advocacy, which we refer to as partial representation. Partial representation occurs when an actor claims to represent a particular group of people but appropriately engages with only a subset of that group. After highlighting symbolic and substantive harms associated with partial representation, we propose several strategies for overcoming it.

A Content Analysis of Patient Advocacy Organization Policies Addressing Institutional Conflicts of Interest.

Introduction: Patient advocacy organizations (PAOs) provide patient education, raise public awareness, and influence health policy for a wide range of diseases. These organizations frequently receive financial support form from drug, device, and biotechnology companies. Though PAOs often develop policies to address institutional conflicts of interest arising from industry relations, little is known about the substance of these policies. Methods: We sampled all PAOs that are members of the National Health Council. Using a standardized search strategy, all policies were obtained from each organization if publicly available. We reviewed policies for content related to restrictions on corporate partnerships, disclosure of corporate funding, and governance and monitoring of corporate partnerships. Results: We found that 24 of 47 (51%) organizations had policies that addressed institutional conflict of interest. A total of 9 of those 24 (38%) policies placed any restriction on the types of corporations that the PAO would or would not partner with. While 16 of the 24 (67%) outlined some process for disclosure of the organization's corporate donors, only 5 of 24 (21%) specified a manner for disclosing the financial value of those donations. Further, 15 of the 24 (63%) policies identified the person or persons responsible for approving corporate partnerships. However, 17 (71%) failed to address or specify the person(s) responsible for ongoing review of those partnerships. Conclusion: Nearly half of the organizations studied did not have publicly available conflict of interest policies. Among those that did, few policies had a substantial level of detail or limitations to guard against conflicts of interest.

National Standards for Public Involvement in Research: missing the forest for the trees.

Biomedical research funding bodies across Europe and North America increasingly encourage-and, in some cases, require-investigators to involve members of the public in funded research. Yet there remains a striking lack of clarity about what 'good' or 'successful' public involvement looks like. In an effort to provide guidance to investigators and research organisations, representatives of several key research funding bodies in the UK recently came together to develop the National Standards for Public Involvement in Research. The Standards have critical implications for the future of biomedical research in the UK and in other countries as researchers and funders abroad look to the Standards as a model for their own policy development. We assess the Standards and find that despite offering useful suggestions for dealing with practical challenges associated with public involvement, the Standards fail to address fundamental questions about when, why and with whom public involvement should be undertaken in the first place. We show that presented without this justificatory context, many of the recommendations in the Standards are, at best, fragments that require substantial elaboration by those looking to apply the Standards in their own work and, at worst, subject to potentially harmful misapplication by well-meaning investigators. As funding bodies increasingly push for public involvement in research, the key lesson of our analysis is that future recommendations about how public involvement should be conducted cannot be coherently formulated without a clear sense of the underlying goals and rationales for public involvement.

Industry Support of Patient Advocacy Organizations: The Case for an Extension of the Sunshine Act Provisions of the Affordable Care Act.

Patient advocacy organizations (PAOs) have long been regarded as important representatives of patient and caregiver interests in health policy debates. Recently, however, PAOs have attracted increased scrutiny over their financial ties to drug and device companies. In the past year, researchers and policymakers have called for the creation of a "sunshine law" requiring mandatory public reporting of industry payments to PAOs. Others have suggested that increased transparency would do little to address, and may even exacerbate, underlying concerns about proindustry bias among industry-funded PAOs. To date, however, the benefits of a sunshine law have not been well articulated, nor have objections to the idea been carefully addressed. In particular, little attention has been paid to clarifying the merits of statutorily mandated disclosure relative to those of increased voluntary disclosure by PAOs. I examine arguments for and against a sunshine law and conclude that the balance of reasons supports the enactment of such a law.