Evaluation of an advisory committee as a model for patient engagement

Patient engagement (PE) is not well defined and little guidance is available to those attempting to employ PE in decision-making relevant to health system improvement. After completing a 2-year PE project, overseen by an Advisory Committee, our objectives were: 1) to evaluate how effectively the project team engaged the Advisory Committee, 2) to examine how Advisory Committee members perceived PE and their role in PE, and 3) to identify barriers and facilitators to PE in order to improve future efforts. Five members of the Advisory Committee completed semi-structured interviews post-project about their experiences. Thematic analysis identified four themes: the approach, participant contributions, participant understanding of PE, and barriers and facilitators to PE. The use of a committee approach was considered beneficial, providing an opportunity to discuss the project in depth, contributing to relationship building, and helping move the project forward. The social aspect of the committee approach was an important part of the engagement process. Participants felt they contributed primarily by participating in discussion, yet could not identify specific contributions they had made. All participants agreed that the experience was meaningful but not profound with regard to how it would impact their engagement, or their engagement of others, in the future. Although experiences were highly subjective, this study suggests that the act of participating in PE has meaning in and of itself to those involved, independent of the activities and/or outcomes of that participation, reflecting a broader public value that PE is an important component of transparent, accountable health systems

Physical Properties and Galactic Distribution of Molecular Clouds identified in the Galactic Ring Survey

We derive the physical properties of 580 molecular clouds based on their 12CO and 13CO line emission detected in the University of Massachusetts-Stony Brook (UMSB) and Galactic Ring surveys. We provide a range of values of the physical properties of molecular clouds, and find a power-law correlation between their radii and masses, suggesting that the fractal dimension of the ISM is around 2.36. This relation, M = (228 +/- 18) R^{2.36+/-0.04}, allows us to derive masses for an additional 170 GRS molecular clouds not covered by the UMSB survey. We derive the Galactic surface mass density of molecular gas and examine its spatial variations throughout the Galaxy. We find that the azimuthally averaged Galactic surface density of molecular gas peaks between Galactocentric radii of 4 and 5 kpc. Although the Perseus arm is not detected in molecular gas, the Galactic surface density of molecular gas is enhanced along the positions of the Scutum-Crux and Sagittarius arms. This may indicate that molecular clouds form in spiral arms and are disrupted in the inter-arm space. Last, we find that the CO excitation temperature of molecular clouds decreases away from the Galactic center, suggesting a possible decline in the star formation rate with Galactocentric radius. There is a marginally significant enhancement in the CO excitation temperature of molecular clouds at a Galactocentric radius of about 6 kpc, which in the longitude range of the GRS corresponds to the Sagittarius arm. This temperature increase could be associated with massive star formation in the Sagittarius spiral arm

Data In, Data Out

Catalog for the exhibition Data In, Data Out held at the Seton Hall University Walsh Gallery, October 31 - December 16, 2011. Curated by Jeanne Brasile. Includes an essay by Jeanne Brasile. Includes color illustrations

High-mass star-forming cloud G0.38+0.04 in the Galactic center dust ridge contains H2CO and SiO masers

We have discovered a new H2CO (formaldehyde) 11,0−11,1 4.82966 GHz maser in Galactic center Cloud C, G0.38+0.04. At the time of acceptance, this is the eighth region to contain an H2CO maser detected in the Galaxy. Cloud C is one of only two sites of confirmed high-mass star formation along the Galactic center ridge, affirming that H2CO masers are exclusively associated with high-mass star formation. This discovery led us to search for other masers, among which we found new SiO vibrationally excited masers, making this the fourth star-forming region in the Galaxy to exhibit SiO maser emission. Cloud C is also a known source of CH3OH Class-II and OH maser emission. There are now two known regions that contain both SiO and H2CO masers in the CMZ, compared to two SiO and six H2CO in the Galactic disk, while there is a relative dearth of H2O and CH3OH Class-II masers in the CMZ. SiO and H2CO masers may be preferentially excited in the CMZ, perhaps because of higher gas-phase abundances from grain destruction and heating, or alternatively H2O and CH3OH maser formation may be suppressed in the CMZ. In any case, Cloud C is a new testing ground for understanding maser excitation conditions

Heimler Syndrome is Caused by Hypomorphic Mutations in the Peroxisome-Biogenesis Genes PEX1 and PEX6

Heimler syndrome (HS) is a rare recessive disorder characterized by sensorineural hearing loss (SNHL), amelogenesis imperfecta, nail abnormalities and occasional or late onset retinal pigmentation. We ascertained eight families with HS, and - using a whole exome sequencing approach - identified biallelic mutations in PEX1 or PEX6 in six of them. Loss of function mutations in both genes are known causes of a spectrum of autosomal recessive peroxisome biogenesis disorders (PBDs), including Zellweger syndrome. PBDs are characterized by leukodystrophy, hypotonia, SNHL, retinopathy, and skeletal, craniofacial, and liver abnormalities. We demonstrate that each HS family has at least one hypomorphic allele that results in extremely mild peroxisomal dysfunction. Although individuals with HS share some subtle clinical features found in PBDs, the overlap is minimal and the diagnosis was not suggested by routine blood and skin fibroblast analyses used to detect PBDs. In conclusion, our findings define Heimler syndrome as a mild PBD, expanding the pleiotropy of mutations in PEX1 and PEX6