A Unique Approach to Quality Improvement Within the Stroke System of Care Utilizing Developmental Evaluation.

Stroke is a significant cause of death that requires multiple systems of care to work together to prevent incidence and improve patient outcomes. The Wisconsin Coverdell Stroke Program partnered with a Model Hospital to understand and improve the stroke system of care in one community. Developmental evaluation (DE) is an approach in which evaluators collaborate closely with project stakeholders to examine complex processes and systems within changeable contexts to develop interventions to improve outcomes. DE was used to assess this community's stroke systems across the care continuum through process mapping with Model Hospital staff and through key stakeholder interviews with Model Hospital and emergency medical services staff, patients, and caregivers. Process mapping identified how patients and health care data flow through the system of care and highlighted areas where streamlining could improve the movement of patients and data across the care continuum. Interviews with stakeholders unveiled challenges and successes about how patient data are accessed and shared across the care continuum, and ideas for improving systems to be more efficient and supportive of stroke prevention and patient outcomes. Overall, DE was valuable in gaining an in-depth understanding of this complex environment to develop strategies to enhance stroke systems of care.

Does Lack of "Genetic-Relative Family Health History" Represent a Potentially Avoidable Health Disparity for Adoptees?

Many adoptees face a number of challenges relating to separation from biological parents during the adoption process, including issues concerning identity, intimacy, attachment, and trust, as well as (for older adopted children) language and other cultural challenges. One common health challenge faced by adoptees involves lack of access to genetic-relative family health history (GRFHx). Lack of GRFHx represents a disadvantage due to a reduced capacity to identify diseases and recommend appropriate screening for conditions for which the adopted person may be at increased risk. In this article, we draw out common features of traditionally understood "health disparities" in order to identify analogous features in the context of adoptees' lack of GRFHx.

Views of nonmedical, health system professionals regarding the return of whole genome sequencing incidental findings.

BACKGROUND: Use of genome sequencing in the clinic continues to increase. In addition to its potential to provide findings of clinical benefit, it also has the potential to identify findings unrelated to the indication for testing (incidental findings). Incidental findings are the subject of considerable debate, particularly following the publication of recommendations by the American College of Medical Genetics and Genomics. This debate involves how and which results should be returned as well as stakeholders' desires for such results. Part of the difficulty in determining best practice in relation to returning incidental findings is the dearth of empirical data available regarding laypersons' attitudes and desire for the sometimes controversial information. METHODS: In an effort to contribute data on views regarding the return of incidental findings following genome sequencing in a clinical setting, a survey specifically designed around the various types of incidental findings that occur, ranging from clinically actionable to nonactionable, was administered to a nonmedical population of medical coders working at a medical school (N = 97). Almost all (98%) of the respondents were women, 80% had 6 or more years of experience as a medical coder, and about three-fourths (74%) of participants reported that they had children. RESULTS: The group surveyed was considerably more interested in receiving all types of results for both themselves and their children than previously surveyed genetics professionals. CONCLUSION: Results from this study offer a snapshot of opinions beyond those of the professional genetic community and demonstrate a striking difference between genetic professionals and a more lay population in terms of their attitudes and desires regarding the return of incidental findings. Additional research is needed to explain the nuances in the perspectives motivating these variations.

The limits of traditional approaches to informed consent for genomic medicine.

This paper argues that it will be important for new genomic technologies to recognize the limits of traditional approaches to informed consent, so that other-regarding implications of genomic information can be properly contextualized and individual rights respected. Respect for individual autonomy will increasingly require dynamic consideration of the interrelated dimensions of individual and broader community interests, so that the interests of one do not undermine fundamental interests of the other. In this, protection of individual rights will be a complex interplay between individual and community concerns.