William H. McKellin

Socioeconomic influences on Vietnamese-Canadian women's breast and cervical cancer prevention practices: a social determinant's perspective.

Breast cancer and cervical cancer are major contributors to morbidity and mortality for the Vietnamese Canadian women. Vietnamese women face multiple barriers to obtaining effective preventive care and treatment for these diseases. This paper reports the influence of socioeconomic factors on Vietnamese Canadian womens breast and cervical cancer screening behaviors. In-depth semistructured interviews were conducted with Vietnamese Canadian women and health care providers. The study revealed that low socioeconomic status is a major barrier to womens participation in breast and cervical cancer screening, despite the fact that health care in Canada is funded publicly by the Medicare system. The Vietnamese Canadian women and health care providers in the present study identified a number of major dimensions through which socioeconomic issues were associated with Vietnamese Canadian womens access to and use of health care for the prevention of breast and cervical cancer, including (a) financial concerns; (b) language, occupational opportunities, and downward mobility; (c) economics and womens households; and (d) low socioeconomic status and screening behaviors. Implications are discussed for increasing Vietnamese Canadian womens utilization of breast and cervical cancer screening services.

“Diagnosis by Behavioral Observation” Home-Videosomnography – A Rigorous Ethnographic Approach to Sleep of Children with Neurodevelopmental Conditions

Introduction: Advanced video technology is available for sleep-laboratories. However, low-cost equipment for screening in the home setting has not been identified and tested, nor has a methodology for analysis of video recordings been suggested. Methods: We investigated different combinations of hardware/software for home-videosomnography (HVS) and established a process for qualitative and quantitative analysis of HVS-recordings. A case vignette (HVS analysis for a 5.5-year-old girl with major insomnia and several co-morbidities) demonstrates how methodological considerations were addressed and how HVS added value to clinical assessment. Results: We suggest an “ideal set of hardware/software” that is reliable, affordable (∼

Engaging Pediatric Intensive Care Unit (PICU) clinical staff to lead practice improvement: the PICU Participatory Action Research Project (PICU-PAR)

500) and portable (=2.8 kg) to conduct non-invasive HVS, which allows time-lapse analyses. The equipment consists of a net-book, a camera with infrared optics, and a video capture device. (1) We present an HVS-analysis protocol consisting of three steps of analysis at varying replay speeds: (a) basic overview and classification at 16× normal speed; (b) second viewing and detailed descriptions at 4–8× normal speed, and (c) viewing, listening, and in-depth descriptions at real-time speed. (2) We also present a custom software program that facilitates video analysis and note-taking (Annotator©), and Optical Flow software that automatically quantifies movement for internal quality control of the HVS-recording. The case vignette demonstrates how the HVS-recordings revealed the dimension of insomnia caused by restless legs syndrome, and illustrated the cascade of symptoms, challenging behaviors, and resulting medications. Conclusion: The strategy of using HVS, although requiring validation and reliability testing, opens the floor for a new “observational sleep medicine,” which has been useful in describing discomfort-related behavioral movement patterns in patients with communication difficulties presenting with challenging/disruptive sleep/wake behaviors.

Clinical Ethics and Family Morality

BackgroundDespite considerable efforts, engaging staff to lead quality improvement activities in practice settings is a persistent challenge. At British Columbia Children’s Hospital (BCCH), the pediatric intensive care unit (PICU) undertook a new phase of quality improvement actions based on the Community of Practice (CoP) model with Participatory Action Research (PAR). This approach aims to mobilize the PICU ‘community’ as a whole with a focus on practice; namely, to create a ‘community of practice’ to support reflection, learning, and innovation in everyday work.MethodologyAn iterative two-stage PAR process using mixed methods has been developed among the PICU CoP to describe the environment (stage 1) and implement specific interventions (stage 2). Stage 1 is ethnographic description of the unit’s care practice. Surveys, interviews, focus groups, and direct observations describe the clinical staff’s experiences and perspectives around bedside care and quality endeavors in the PICU. Contrasts and comparisons across participants, time and activities help understanding the PICU culture and experience. Stage 2 is a succession of PAR spirals, using results from phase 1 to set up specific interventions aimed at building the staff’s capability to conduct QI projects while acquiring appropriate technical skills and leadership capacity (primary outcome). Team communication, information, and interaction will be enhanced through a knowledge exchange (KE) and a wireless network of iPADs.RelevanceLack of leadership at the staff level in order to improve daily practice is a recognized challenge that faces many hospitals. We believe that the PAR approach within a highly motivated CoP is a sound method to create the social dynamic and cultural context within which clinical teams can grow, reflect, innovate and feel proud to better serve patients.

Personalized evidence of treatment effects for the practice of personalized medicine: a new model of care

through no action of his own. (If it were otherwise, anyone who could afford to give more to those in dire need would be harming them, and intervening Robin Hoods would be vindicated). In this respect Doukas’s and Berg’s cases represent a deep disanalogy with Tarasoff and public health law, and more of an analogy with “good Samaritan” laws—or rather, the lack of them. The state is notoriously reluctant to mandate that individuals help others in need. This remains true however dire the need and however easily the help could be provided. Thus, while their behavior was monstrous and inexcusable, no one was legally culpable (nor, in my view, were they guilty of a rights violation) in the celebrated case some years ago in which Kitty Genovese was raped and murdered in the street, while screaming loudly enough to attract the attention of 38 people, all of whom watched from their apartment windows but failed to come to her rescue, or even to call 911. For these reasons I conclude the Cancer Genetics Studies Consortium is correct in holding that third parties have no claim on a patient’s conadential medical information, unless the patient grants them access.

Grounding and Relational Schemas in Managalase, Papua New Guinea

Personalized medicine, based on individuals’ genomes or proteomes challenges conventional clinical diagnostic categories and increases the number of “rare conditions” which may benefit from personalized treatments. Current drug evaluation, based on diagnostic categories ignores the large range of phenotypic expressions; the considerable variation in drug responses by individuals creates legitimate concerns regarding the efficacy and safety of many drugs for patients. Furthermore, when diseases affect individuals’ daily activities, standardized population-based assessment tools lack the capacity to reliably reflect a drug’s effects on outcomes most relevant to the patient’s own everyday needs and perception of wellness - the individual patient’s Personal Outcomes of Specific Interest (“POSI”). The uniqueness of individual’s POSI challenges the classic phase 3 trials to assess drug effects; conversely, the validity of evaluating drug effects with standard tools – surrogate markers of a true experience – is questionable. It is therefore essential to develop a new approach to carefully assess the impact of these drugs on the outcomes that are most important for patients while also assessing the bio-physiological effectiveness. In 2010, we developed a personalized medicine strategy using a systematic consultative model of decision-making that incorporates individual patients/families’ insights about the impact of drugs on everyday activities and their preferred outcomes into the treatment evaluation and decision making process; we also developed with UBC School of Engineering the “Wellness Tracker” (WT) software that enables patients/families to track signs and symptoms on a daily basis, and share this information with caregivers (http://wellnesstracker.org), to guide therapeutics and decisions. WT can be used in n-of-1 clinical trials that are the best design for assessing drug effectiveness and side effects at individual and population levels. The personal evaluation model (PEM) includes 4 steps to: (i) identify POSI with the patient/family in consultation with the physician; (ii) determine which drug effects would make the treatment useful; (iii) assess changes in POSI over time and scale this change using the goal attainment scaling (GAS) technique; (iv) share this information to the discussion with care providers to make the most appropriate decisions regarding drug usage and adherence considering utility scorings from the different parties. This approach also provides important data for policy makers to evaluate reimbursement for expensive treatments. Finally, it can also be used to study off-label applications of previously approved drugs, herbal products and dietary supplements; most of which are never evaluated rigorously. Presentation illustrates use of Personalized Evaluation Model in practice.

Personalized Evaluation Model for making informed decisions in treatments for individuals with intellectual disability

Cultural Linguistics assumes that cultural schemas emerge from the interactions among members of social groups and provide grounding for language and social interaction. Consequently, an investigation of the dynamics of social relationships is central to understanding this process. In part, this requires an appreciation of the social relationships among members of the society as speakers and audience members who seek what is commonly referred to as “common ground” for activity-oriented interaction. Using data from the Managalase of Papua New Guinea this chapter examines how social relations ground cultural schemas of relatedness, personhood and epistemology, and shape their distribution within a society. These cultural schemas and their instantiation in social interaction raise questions about the nature and role of “common ground” and intersubjectivity in language-based social interaction, highlight the importance of viewpoint and perspective in construal, and reassess the ways that speakers and audiences use language to mediate collaboration for joint action.

Hearing impaired speech in noisy classrooms

Background: Several inborn errors of metabolism leading to neurodevelopmental issues including intellectual disability have become amenable to causal therapy. However there is a gap between identifying new treatments and assessing their effectiveness due to lack of generally accepted endpoints particularly with behaviour and cognitive functions as changes might not be captured as significant by formal tests. These challenges arise in part from the considerable phenotypic clinical heterogeneity and variability of treatment responses in each patient. In 2011, we developed a Personalized Evaluation Model (PEM) using a systematic consultative strategy of decision-making and treatment evaluation that incorporates individual children/families’ insights about the impact of treatment on everyday activities and their preferred outcomes. Methods: PEM is a 4-step process: (i) identify personal outcomes of specific interest (“POSI”) from the patient/family in consultation with the physician (ii) determine which drug effects would make the treatment useful from the child/family’s view point (iv) assess changes in POSI over time and scale this change using goal attainment scaling technique (v) bring this information to the discussion with care providers to make the most appropriate decisions regarding the treatment. At this stage both POSI and traditional clinical endpoints are considered in the context of determining treatment utility. Results: The model was successfully implemented in a few patients with Creatine Transporter Deficiency treated with amino acid supplements. There was no change in scores obtained using standard scales as they were not sensitive enough to capture the variance. Discrepancies were found between results of standard cognitive scales and POSI confirming the value of our model in establishing endpoints relevant to the patient. Discussion: PEM approach is ultimately outcomes oriented, with a focus on what patients’ value–the particular improvements that they desire in their ability to functioning in their daily lives. This complements the traditional evidence-based approach to treatment recommendation.

The Big D(eal): professional identity through discursive constructions of ‘patient’

Noisy classrooms have been shown to induce among students patterns of interaction similar to those used by hearing impaired people [W. H. McKellin et al., GURT (2003)]. In this research, the speech of children in a noisy classroom setting was investigated to determine if noisy classrooms have an effect on students’ speech. Audio recordings were made of the speech of students during group work in their regular classrooms (grades 1–7), and of the speech of the same students in a sound booth. Noise level readings in the classrooms were also recorded. Each student’s noisy and quiet environment speech samples were acoustically analyzed for prosodic and segmental properties (f0, pitch range, pitch variation, phoneme duration, vowel formants), and compared. The analysis showed that the students’ speech in the noisy classrooms had characteristics of the speech of hearing‐impaired persons [e.g., R. O’Halpin, Clin. Ling. and Phon. 15, 529–550 (2001)]. Some educational implications of our findings were identified. [...

Acoustics and sociolinguistics: Patterns of communication in hearing impairing classrooms

Professional identity formation has become a key focus for medical education. Who one becomes as a physician is contingent upon learning to conceptualise who the other is as a patient, yet, at a time when influential ideologies such as patient‐centred care have become espoused values, there has been little empirical investigation into assumptions of ‘patient’ that trainees take up as they progress through their training.