Giving patients granular control of personal health information: Using an ethics ‘Points to Consider’ to inform informatics system designers

Objective: There are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this. Methods: We reviewed existing literature on the ethical and policy issues, developed an ethics framework called a “Points to Consider” (P2C) document, and convened a national expert panel to review and critique the P2C. Results: We developed the P2C to aid informaticists designing an advanced query tool for an electronic health record (EHR) system in Indianapolis. The P2C consists of six questions (“Points”) that frame important ethical issues, apply accepted principles of bioethics and Fair Information Practices, comment on how questions might be answered, and address implications for patient care. Discussion: The P2C is intended to clarify whatis at stake when designers try to accommodate potentially competing ethical commitments and logistical realities. The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control. While consideration of ethical issues is coming to the forefront of medical informatics design and development practices, more reflection is needed to facilitate optimal collaboration between designers and ethicists. This report contributes to that discussion

From the Commercial to the Communal: Reframing Taboo Trade-Offs in Religious and Pharmaceutical Marketing

Although consumers typically expect organizations to profit from marketing goods and services, they also believe that certain organizations, like those that focus on religion and health, should prioritize communal obligations. Indeed, consumers may find it morally distressing when communally focused organizations use overtly commercial marketing strategies like rebranding or value-based pricing. We demonstrate how moral distress and consumer backlash result from such taboo trade-offs and investigate when communal-sharing rhetoric for religious and pharmaceutical marketing reduces distress. Communal justifications used by communally focused organizations are particularly effective when consumers are not closely monitoring the motives of the organization or when the product is need-based. However, communal justifications become less effective and market-pricing justifications become more effective when consumers are attuned to the persuasive intentions of the organization. Implications for consumer goals are discussed

Clear Cell Cancer of the Uterine Corpus: The Association of Clinicopathologic Parameters and Treatment on Disease Progression

This paper presents a single-institution experience regarding the clinicopathologic features and treatment strategies used in uterine clear cell cancer (UCC), a rare, aggressive histologic subtype of uterine cancer with poor prognosis and discusses parameters associated with progression-free survival (PFS) and overall survival (OS). A retrospective chart review was performed on all patients (n = 80) diagnosed with UCC and treated between 1994 and 2009 at a single academic institution. Data on demographics, FIGO stage, treatment regimens, and recurrences were collected. Patients with early-stage UCC had an excellent survival regardless of adjuvant therapy. Advanced-stage patients had a worse survival. Vaginal apex brachytherapy was associated with an increased OS (P = 0.02) but not PFS (P = 0.10). The use of platinum-based chemotherapy in combination with vaginal apex brachytherapy did not significantly improve survival. Innovative therapies still need to be identified for this uncommon uterine cancer

The Relationship between Tobacco Retailer Density and Neighborhood Demographics in Ohio

Introduction: Studies from various parts of the country suggest that tobacco-related health disparities are exacerbated by disparitiesin the distribution of tobacco retailers (convenience stores, tobacco shops, etc.). The purpose of the present study was to use advancedspatial modeling techniques for count data to estimate current disparities in tobacco retailer density in Ohio.Methods: We identified and geocoded 11,392 tobacco retailers in Ohio. Next, we obtained census tract-level information on race/ethnicity, poverty, and age and obtained county-level information on whether an area was Urban, Suburban, or Rural. Finally, we used negative binomial generalized linear models, adapted for residual spatial dependence, to determine the association between per capita tobacco retailer density and demographic characteristics—summarized by adjusted rate ratios.Results: There were more (from 1.4-1.9 times as many) retailers per capita in high-poverty vs. low-poverty tracts. Poverty also interacted with age: the association between high poverty and high retailer density was stronger for tracts with a low youth population. Density was also greater in tracts with a high (vs. low) prevalence of African Americans (1.1 times as many) and Hispanics (1.2 times as many). Finally, density was generally greater in rural (vs. suburban or urban) tracts, although the effect was modified by a three-way interaction: density was particularly high for rural tracts that also had both a high prevalence of poverty and a low youth population.Discussion: Overall, our findings indicate that Ohio’s vulnerable populations are exposed to a greater per capita density of tobaccoretailers. There is a need for state and local-level tobacco control policies that will improve equity and reduce health disparities

Managed Relocation: Reducing the Risk of Biological Invasion

Key Finding Any organism that is relocated to a novel ecosystem has the potential to become an invasive species or spread “hitching” invasive species, or both. Managed Relocation is not congruent with Executive Order 13112 to the extent that it might facilitate “economic or environmental harm or harm to human, animal, or plant health.” Consequently, the actions by federal agencies or those entities supported by federal funding to engage in managed relocation need to be addressed in a manner consistent with EO 13751 Section 3(3), which compels Agencies to: Refrain from authorizing, funding, or implementing actions that are likely to cause or promote the introduction, establishment, or spread and invasive species in the United States, unless pursuant to guidelines that it has prescribed, the agency has determined and made public its determination that the benefits of such actions clearly outweigh the potential harm caused by invasive species; and that all feasible and prudent measures to minimize risk of harm will be taken in conjunction with these actions

Points to consider in ethically constructing patient-controlled electronic health records

Patient advocates and leaders in informatics have long proposed that patients should have greater ability to control the information in their electronic health record (EHR), including how it can be accessed by their health care providers. The value of such “granular” control, as it has been termed, has been supported prominently in an influential report by the President’s Council of Advisors on Science and Technology (PCAST). Recently, the U.S. Department of Health and Human Services (HHS) Office of the National Coordinator for Health Information Technology (ONC) funded several projects to study key components of EHR systems, including exploring ways to allow granular control. This “Points to Consider” document provides an overview of the benefits, risks and challenges of granular control of EHRs; a review of the key ethical principles, values, and Fair Information Practices that ought to guide development of an EHR that accommodates granular control, and seven detailed Points to Consider to guide decision making.Award No: 90HT0054/01, a cooperative agreement program from the US Department of Health and Human Services, Office of the National Coordinator for Health IT to Indiana Health Information Technology, Inc. (IHIT) under the State HIE – Challenge Grant Program to the Indiana University School of Medicine and Regenstrief Institute, Inc

The optical conductivity of the quasi one-dimensional conductors: the role of forward scattering by impurities

We calculate the average conductivity sigma (omega) of interacting electrons in one dimension in the presence of a long-range random potential (forward scattering disorder). Taking the curvature of the energy dispersion into account, we show that weak disorder leads to a transport scattering rate that vanishes as omega^2 for small frequency omega. This implies that the real part of the conductivity remains finite for omega -> 0, while the imaginary part diverges. These effects are lost within the usual bosonization approach, which relies on the linearization of the energy dispersion. We discuss our result in the light of a recent experiment.Comment: 5 RevTex pages; more careful comparison with experiments and discussion of interchain hopping added; some references added; to appear in Phys. Rev.

Patient Preferences in Controlling Access to Their Electronic Health Records: a Prospective Cohort Study in Primary Care

Introduction: Previous studies have measured individuals’ willingness to share personal information stored in electronic health records (EHRs) with health care providers, but none has measured preferences among patients when they are allowed to determine the parameters of provider access. Methods: Patients were given the ability to control access by doctors, nurses, and other staff in a primary care clinic to personal information stored in an EHR. Patients could restrict access to all personal data or to specific types of sensitive information, and could restrict access for a specific time period. Patients also completed a survey regarding their understanding of and opinions regarding the process. Results: Of 139 eligible patients who were approached, 105 (75.5 %) were enrolled, and preferences were collected from all 105 (100 %). Sixty patients (57 %) did not restrict access for any providers. Of the 45 patients (43 %) who chose to limit the access of at least one provider, 36 restricted access only to all personal information in the EHR, while nine restricted access of some providers to a subset of the their personal information. Thirty-four (32.3 %) patients blocked access to all personal information by all doctors, nurses, and/or other staff, 26 (24.8 %) blocked access by all doctors and/or nurses, and five (4.8 %) denied access to all doctors, nurses, and staff. Conclusions: A significant minority of patients chose to restrict access by their primary care providers to personal information contained in an EHR, and few chose to restrict access to specific types of information. More research is needed to identify patient goals and understanding of the implications when facing decisions of this sort, and to identify the impact of patient education regarding information contained in EHRs and their use in the clinical care settin

Cryptosporidium, Enterocytozoon, and Cyclospora Infections in Pediatric and Adult Patients with Diarrhea in Tanzania.

Cryptosporidiosis, microsporidiosis, and cyclosporiasis were studied in four groups of Tanzanian inpatients: adults with AIDS-associated diarrhea, children with chronic diarrhea (of whom 23 of 59 were positive [+] for human immunodeficiency virus [HIV]), children with acute diarrhea (of whom 15 of 55 were HIV+), and HIV control children without diarrhea. Cryptosporidium was identified in specimens from 6/86 adults, 5/59 children with chronic diarrhea (3/5, HIV+), 7/55 children with acute diarrhea (0/7, HIV+), and 0/20 control children. Among children with acute diarrhea, 7/7 with cryptosporidiosis were malnourished, compared with 10/48 without cryptosporidiosis (P < .01). Enterocytozoon was identified in specimens from 3/86 adults, 2/59 children with chronic diarrhea (1 HIV+), 0/55 children with acute diarrhea, and 4/20 control children. All four controls were underweight (P < .01). Cyclospora was identified in specimens from one adult and one child with acute diarrhea (HIV-). Thus, Cryptosporidium was the most frequent and Cyclospora the least frequent pathogen identified. Cryptosporidium and Enterocytozoon were associated with malnutrition. Asymptomatic fecal shedding of Enterocytozoon in otherwise healthy, HIV children has not been described previously