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

Factors Affecting Access to Administrative Health Data for Research in Canada: A Study Protocol

In Canada, most provinces have established administrative health data repositories to facilitate access to these data for research. Anecdotally, researchers have described delays and substantial inter-provincial variations in the timeliness of data access approvals and receipt of data. Currently, the reasons for these delays and variations in timeliness are not well understood. This paper provides a study protocol for (1) identifying the factors affecting access to administrative health data for research within select Canadian provinces, and (2) comparing factors across provinces to assess whether and how they contribute to inter-provincial variations in access to administrative health data for research

The Slope of the Near Infrared Extinction Law

We determine the slope of the near infrared extinction power law (A$_{\lambda} \propto \lambda^{-\alpha}$) for 8 regions of the Galaxy between l$\sim27^{\circ}$ and $\sim100^{\circ}$. UKIDSS Galactic Plane Survey data are compared, in colour-colour space, with Galactic population synthesis model data reddened using a series of power laws and convolved through the UKIDSS filter profiles. Monte Carlo simulations allow us to determine the best fit value of $\alpha$ and evaluate the uncertainty. All values are consistent with each other giving an average extinction power law of $\alpha$=2.14$^{+0.04}_{-0.05}$. This is much steeper than most laws previously derived in the literature from colour excess ratios, which are typically between 1.6 and 1.8. We show that this discrepancy is due to an inappropriate choice of filter wavelength in conversion from colour excess ratios to $\alpha$ and that effective rather than isophotal wavelengths are more appropriate. In addition, curved reddening tracks, which depend on spectral type and filter system, should be used instead of straight vectors.Comment: Accepted by MNRAS: 11/08/09. 13 pages, 10 figures, 2 table

Numerical Analysis of Aerodynamic Impact on Passenger Vehicles during Cornering

Governmental regulations and increased consumer awareness of the negative effects of green-house gases has led the automotive industry to massive invest in the energy efficiency of its fleet. One way towards accomplishing reduced fuel consumption is minimizing the drag of vehicles by improving its aerodynamics. Fuel consumption is measured by standardized driving cycles which do not consider aerodynamic losses during cornering. It is uncertain whether cornering has a significant impact on the drag, and the present study intends to investigate this numerically, using a generic vehicle model called the DrivAer. The model is considered in two different configurations: the notchback and the squareback. Cornering in various radiuses is modelled using a Moving Reference Frame approach which provides the correct flow conditions when simulating a stationary vehicle where the wind and ground are moving instead. Simulations are also performed for straight ahead driving conditions to provide data for comparison to a cornering vehicle. Results indicate that the drag increases when the cornering radius is small. This implies a higher fuel consumption than the standardized driving cycles suggest using straight-ahead drag coefficients. The detailed underbody of the DrivAer model is not symmetrical which, for large turning radiuses, results in a decrease of drag for left turns, while turning right results in an increase of drag. Cornering affects the squareback and the notchback similarly, although the squareback experiences a slightly higher drag throughout the cases investigated

About the nature of Mercer14

We used UKIRT near infrared (NIR) broad band JHK photometry, narrow band imaging of the 1-0S(1) molecular hydrogen emission line and mid infrared Spitzer IRAC data to investigate the nature of the young cluster Mercer14. Foreground star counts in decontaminated NIR photometry and a comparison with the Besancon Galaxy Model are performed to estimate the cluster distance. This method yields a distance of 2.5kpc with an uncertainty of about 10% and can be applied to other young and embedded clusters. Mercer14 shows clear signs of ongoing star formation with several detected molecular hydrogen outflows, a high fraction of infrared excess sources and an association to a small gas and dust cloud. Hence, the cluster is less than 4Myrs old and has a line of sight extinction of A_K=0.8mag. Based on the most massive cluster members we find that Mercer14 is an intermediate mass cluster with about 500Mo.Comment: 10pages, 2tables, 5figures, accepted for publication by MNRAS, a version with higher resolution figures can be found at http://astro.kent.ac.uk/~df

How to assess pharmacogenomic tests for implementation in the NHS in England

Aims: Pharmacogenomic testing has the potential to target medicines more effectively towards those who will benefit and avoid use in individuals at risk of harm. Health economies are actively considering how pharmacogenomic tests can be integrated into health care systems to improve use of medicines. However, one of the barriers to effective implementation is evaluation of the evidence including clinical usefulness, cost‐effectiveness, and operational requirements. We sought to develop a framework that could aid the implementation of pharmacogenomic testing. We take the view from the National Health Service (NHS) in England. Methods: We used a literature review using EMBASE and Medline databases to identify prospective studies of pharmacogenomic testing, focusing on clinical outcomes and implementation of pharmacogenomics. Using this search, we identified key themes relating to the implementation of pharmacogenomic tests. We used a clinical advisory group with expertise in pharmacology, pharmacogenomics, formulary evaluation, and policy implementation to review data from our literature review and the interpretation of these data. With the clinical advisory group, we prioritized themes and developed a framework to evaluate proposals to implement pharmacogenomics tests. Results: Themes that emerged from review of the literature and subsequent discussion were distilled into a 10‐point checklist that is proposed as a tool to aid evidence‐based implementation of pharmacogenomic testing into routine clinical care within the NHS. Conclusion: Our 10‐point checklist outlines a standardized approach that could be used to evaluate proposals to implement pharmacogenomic tests. We propose a national approach, taking the view of the NHS in England. Using this approach could centralize commissioning of appropriate pharmacogenomic tests, reduce inequity and duplication using regional approaches, and provide a robust and evidence‐based framework for adoption. Such an approach could also be applied to other health systems

A framework to facilitate interprovincial sharing of secondary health data in Canada

Introduction The use of administrative health data can generate knowledge to improve the delivery and outcomes of health care. Yet, the sharing and use of secondary health data presents concerns given these data were not collected for health research purposes. The sharing of patient-level health data across Canadian provinces is uncommon. Objectives and Approach The Maritime SPOR SUPPORT Unit (a patient-oriented research unit serving the three Canadian Maritime Provinces of New Brunswick, Nova Scotia, and Prince Edward Island) struck a Working Group to develop a conceptual framework for the interprovincial sharing of secondary health data for research purposes. Membership comprised a researcher, two privacy managers/officers, and a manager of research ethics. The framework sought to: (1) facilitate researchers’ understanding of the foundational elements (legal/ethical) of interprovincial data sharing for health research; and (2) identify challenges and opportunities for improving sharing of data across the Maritime Provinces to support patient-oriented research. Results In all three Maritime provinces, de-identified personal health information may be used for approved health research purposes, with each province having its own data holdings and repositories. Applying the applicable governance principles and regulations (i.e., the ethical governance of research involving human subjects and the legal governance of health information) and drawing on best practices nationally and internationally, a framework was developed to incorporate and address the various aspects of sharing and using health data across provinces for the purposes of health research. The resultant framework discusses when and how the legal and ethical frameworks apply, the de-identification of data, degrees of data sharing, and information governance. It also identifies challenges and opportunities to moving forward with interprovincial data sharing. Conclusion/Implications Development of this framework was the first phase of a multi-phase approach to move towards improved interprovincial data sharing for patient-oriented research. Cross-provincial sharing and linkage of data can lead to comprehensive, cost-effective, and multi-disciplinary research that benefits patients, the health system, and the public at large

Understanding how cancer survivors’ needs and experiences after treatment impact their health care utilization: a survey-administrative health data linkage study.

Objectives To link population-based survey data to routinely collected administrative health data to enable investigation of how cancer survivors' ongoing physical, emotional, and practical needs and experiences after completing cancer treatment impact their healthcare utilization, including discharge from oncology to primary care. Approach The "Cancer Transitions Survey" is a population-based survey examining survivors' experiences and needs after completing cancer treatment. The survey was administered by the Nova Scotia Cancer Registry (NSCR) as part of a national study, the largest of its kind in Canada. Respondents included Nova Scotian survivors of breast, melanoma, colorectal, prostate, hematologic, and young adult cancers who were 1-3 years after treatment. Survey responses were linked to cancer registry, physicians' claims, hospitalization, and ambulatory care data. The data linkage provided a full four years of healthcare utilization data for each cancer survivor, beginning one year after their cancer diagnosis. Results 1557 survivors responded to the survey and subsequently had their data linked. Collectively, breast, colorectal, and prostate cancer survivors represented 78.5% of survey respondents. Most respondents (65.3%) were 65 years of age or older and 69.8% had an existing co-morbid condition. Regression analyses are now being conducted to investigate whether the type and magnitude of post-treatment care needs, and the interventions (services and supports) received, impact health care utilization in the survivorship period, including discharge to primary care. Conclusion This study represents a unique opportunity to link data unavailable in administrative health data: namely, self-reported needs and use of non-physician services and supports (e.g., support groups, counselling). As such, this dataset permits investigation of healthcare utilization and patterns of care that cannot be accomplished using administrative health data alone

Virtual follow-up care among breast and prostate cancer patients during and beyond the COVID-19 pandemic: association with distress

Background: The purpose of this study was to investigate associations between self-reported distress (anxiety/depression) and satisfaction with and desire for virtual follow-up (VFU) care among cancer patients during and beyond the COVID-19 pandemic. Methods: Breast and prostate cancer patients receiving VFU at an urban cancer centre in Toronto, Canada completed an online survey on their sociodemographic, clinical, and technology, characteristics and experience with and views on VFU. EQ5D-5 L was used to assess distress. Statistical models adjusted for age, gender, education, income and Internet confidence. Results: Of 352 participants, average age was 65 years, 48% were women,79% were within 5 years of treatment completion, 84% had college/university education and 74% were confident Internet users. Nearly, all (98%) had a virtual visit via phone and 22% had a virtual visit via video. The majority of patients (86%) were satisfied with VFU and 70% agreed that they would like VFU options after the COVID-19 pandemic. Participants who reported distress and who were not confident using the Internet for health purposes were significantly less likely to be satisfied with VFU (OR = 0.4; 95% CI: 0.2–0.8 and OR = 0.19; 95% CI: 0.09–0.38, respectively) and were less likely to desire VFU option after the COVID-19 pandemic (OR = 0.49; 95% CI: 0.30–0.82 and OR = 0.41; 95% CI: 0.23–0.70, respectively). Conclusions: The majority of respondents were satisfied with VFU and would like VFU options after the COVID-19 pandemic. Future research should determine how to optimize VFU options for cancer patients who are distressed and who are less confident using virtual care technology