- Dept. Epidemiology and Community Medicine,
University of Ottawa,
451 Smyth Rd,
Ottawa,
ON
K1H 8M5 - Tel: 613 562 5800 ext 8288
Stuart Nicholls
Children's Hospital of Eastern Ontario, Research Institute, Department Member
- Mixed Methods (Methodology), Social Research Methods and Methodology, Social Sciences, Medical Genetics, Social sciences and values, Sociology Of Scientific Knowledge, and 37 moreCritical Medical Studies, Ethics, Public Health Ethics, Applied Philosophy, Medical Sociology, Bioethics, Social Philosophy, Social Representations, Public Health Policy, Philosophy of Social Science, Public Health, Preventive Health, Decision Making Under Uncertainty, Decision Making, Genetics, Qualitative methodology, Qualitative Research, Food and Nutrition, Population Genetics, Taxation, Medical Ethics, Obesity, Mixed Methods, Structural Equation Modeling, In-depth Interviews, Population Health, Childhood Obesity, Health Equity, Informed Consent, Mixed Methodologies, Public Health Ethics (Research Methodology), Essential Newborn Care, Parents Responsibility In Childhood Obesity, Philosophy, Applied Ethics, Health Care, and Medical Humanitiesedit
- Canadian Institutes of Health (CIHR) Postdoctral Fellow, Department of Epidemiology & Community Medicine, University ... moreCanadian Institutes of Health (CIHR) Postdoctral Fellow, Department of Epidemiology & Community Medicine, University of Ottawa.
My work is at the intersection of public health ethics, medical sociology, and knowledge translation (KT) although I have a special interest in genetics (and genomics) and personalized medicine.
I am an advocate of mixed methods approaches and interdisciplinary research. Methodologically I have a keen interest in latent variable methods such as structural equation modelling.edit
Chapter list: -- Empirical uncertainty : some difficulties in placing obesity centerstage -- Normative uncertainty : what do we want from policies to address childhood obesity -- Childhood obesity and parental responsibility --... more
Chapter list:
-- Empirical uncertainty : some difficulties in placing obesity centerstage
-- Normative uncertainty : what do we want from policies to address childhood obesity
-- Childhood obesity and parental responsibility
-- Childhood obesity interventions, equity and social justice
-- Stigma and weight bias : implications for childhood obesity interventions
-- Childhood obesity and the "obesogenic environment"
-- Price policies as strategies for obesity prevention
-- Responding to food marketing targeted at children : regulation, social marketing and media literacy
-- Schools and childhood obesity
-- Childhood obesity : some practical implications.
-- Empirical uncertainty : some difficulties in placing obesity centerstage
-- Normative uncertainty : what do we want from policies to address childhood obesity
-- Childhood obesity and parental responsibility
-- Childhood obesity interventions, equity and social justice
-- Stigma and weight bias : implications for childhood obesity interventions
-- Childhood obesity and the "obesogenic environment"
-- Price policies as strategies for obesity prevention
-- Responding to food marketing targeted at children : regulation, social marketing and media literacy
-- Schools and childhood obesity
-- Childhood obesity : some practical implications.
Research Interests: Marketing, Ethics, Free Will, Moral Responsibility, Bioethics, Obesity, and 30 moreStigma, Taxation, Health Inequalities, Social Justice, Stigmatization, Public Health Policy, Media Literacy, Complexity, Physical Activity, Childhood Obesity, Public Health, Causality, Equity, Food Processing, Television, Obesogenic environment, Safety, Schools, Children, Moral Blame, Uncertainty, Dieting, Physical activity and sedentary behaviour epidemiology, BMI, Paternalism, Traffic, Body Mass Index, BMI-for-age, Food Taboos, and Agricultural Subsidies
Introduction: Empirical studies of attitudes toward consent practices for newborn screening indicate varied perspectives, depending on jurisdiction. An assumption within the literature is that terminology such as ‘informed consent’ is... more
Introduction: Empirical studies of attitudes toward consent practices for newborn screening indicate varied perspectives, depending on jurisdiction. An assumption within the literature is that terminology such as ‘informed consent’ is consistently interpreted by all stakeholders, and that as a result the differences in expressed opinions are a result of different attitudes toward consent. Recent studies call into question this assumption, and indicate that at least in some cases attitudes may be dependent on individual meaning, which may differ between respondents. This study examines understandings of consent terminology within two divergent newborn bloodspot screening programs in Canada. Methods and Analysis: Semi-structured interviews were conducted with parents whose children had been offered screening (n=28), healthcare professionals (n=19), and policy decision-makers (n=17). The study was undertaken in parallel at within Ontario and Newfoundland & Labrador. These sites vary in...
Research Interests:
Improving the transparency and quality of reporting in biomedical research is considered ethically important; yet, this is often based on practical reasons such as the facilitation of peer review. Surprisingly, there has been little... more
Improving the transparency and quality of reporting in biomedical research is considered ethically important; yet, this is often based on practical reasons such as the facilitation of peer review. Surprisingly, there has been little explicit discussion regarding the ethical obligations that underpin reporting guidelines. In this commentary, we suggest a number of ethical drivers for the improved reporting of research. These ethical drivers relate to researcher integrity as well as to the benefits derived from improved reporting such as the fair use of resources, minimizing risk of harms, and maximizing benefits. Despite their undoubted benefit to reporting completeness, questions remain regarding the extent to which reporting guidelines can influence processes beyond publication, including researcher integrity or the uptake of scientific research findings into policy or practice. Thus, we consider investigation on the effects of reporting guidelines an important step in providing evidence of their benefits.
Research Interests:
Objective Reporting of consent rates in published articles is important in order to determine potential sources of bias, and validity and generalizability of results. Our objective was to determine the percentage of critical care studies... more
Objective
Reporting of consent rates in published articles is important in order to determine potential sources of bias, and validity and generalizability of results. Our objective was to determine the percentage of critical care studies for which the consent rate was reported.
Study Design and Setting
We reviewed all articles published in eight medical journals in 2013. Studies meeting the following inclusion criteria were selected: 1) randomized controlled trial (RCT) or observational clinical study, 2) study population involving critically ill patients, and 3) part of the study occurring in an intensive care unit.
Results
1871 articles were screened of which 156 were included. The consent rate was discernable in 30.8 % of articles (48/156, 95% CI: 24.1, 38.4) with a median consent rate of 86.9% (IQR 71.6, 94.1). A statement on Research Ethics Board (REB) approval was included in 96.8% of studies. There was a significant difference in reporting of consent rates between RCTs and non RCTs (58.70% versus 19.09%, P < 0.0001).
Conclusion
Consent rates are reported in less than one third of critical care studies. We encourage journals to require reporting of consent rates in order to improve interpretation, validity and generalizability of critical care study results.
Reporting of consent rates in published articles is important in order to determine potential sources of bias, and validity and generalizability of results. Our objective was to determine the percentage of critical care studies for which the consent rate was reported.
Study Design and Setting
We reviewed all articles published in eight medical journals in 2013. Studies meeting the following inclusion criteria were selected: 1) randomized controlled trial (RCT) or observational clinical study, 2) study population involving critically ill patients, and 3) part of the study occurring in an intensive care unit.
Results
1871 articles were screened of which 156 were included. The consent rate was discernable in 30.8 % of articles (48/156, 95% CI: 24.1, 38.4) with a median consent rate of 86.9% (IQR 71.6, 94.1). A statement on Research Ethics Board (REB) approval was included in 96.8% of studies. There was a significant difference in reporting of consent rates between RCTs and non RCTs (58.70% versus 19.09%, P < 0.0001).
Conclusion
Consent rates are reported in less than one third of critical care studies. We encourage journals to require reporting of consent rates in order to improve interpretation, validity and generalizability of critical care study results.
Research Interests:
Research Interests:
Background: The continued development of genomics and personalized medicine could have great benefits for public health, but these benefits cannot be realized if there is a lack of understanding of the meaning of genomic test results and... more
Background: The continued development of genomics and personalized medicine could have great benefits for public health, but these benefits cannot be realized if there is a lack of understanding of the meaning of genomic test results and how they can be appropriately applied to any individual patient for measurable health improvements. Higher levels of health literacy have been associated with use of preventive health services and engagement in health decision-making. The public's health and genomic literacy becomes of particular importance with direct-to-consumer genomic testing, as those tested outside of a clinical setting may not have access to a health care professional (HCP) to provide full interpretation of results and advice about risk management. Aims: To identify perceived needs and expectations of the public for education about genomic profiling. Methods: Mixed-method public engagement workshops with citizens aged 50+ in Ottawa ON (n=46) and St John's NL (n=74). R...
Despite newborn screening being available for over 50 years in some provinces, there is a paucity of data about the structures and organisation of the different provincial programs in Canada. And while resources such as the National... more
Despite newborn screening being available for over 50 years in some provinces, there is a paucity of data about the structures and organisation of the different provincial programs in Canada. And while resources such as the National Newborn Screening & Global Resource Center (NNSGRC) and Baby’s First Test have provided State-level information for the United States, there is no equivalent resource in Canada that documents nationwide practice. Collecting information on the organisation and practice of newborn screening in Canada will allow for the creation of such a resource. Furthermore, this information will facilitate the sharing of practices on issues important for program operation, such as consent approaches and governance structures, but may also enable a more equitable approach to screening across Canada
Despite the longstanding availability of newborn bloodspot screening (NBS), very few studies have explored what leads parents to accept or decline NBS for their child. As part of a larger study, we collected and explored this information... more
Despite the longstanding availability of newborn bloodspot screening (NBS), very few studies have explored what leads parents to accept or decline NBS for their child. As part of a larger study, we collected and explored this information to allow better understanding of the parents’ decision-making process and reasoning related to refusal of newborn screening, which in turn could inform program development. We also explored the reasoning behind parental decline of NBS as reported by healthcare professionals (HCPs).
In making his case, he begins with why the body matters before considering the body and whether it can be viewed as a property, commodity, or a gift (Chapter 2). Chapter 3 considers the embodied self in the context of blood and organ... more
In making his case, he begins with why the body matters before considering the body and whether it can be viewed as a property, commodity, or a gift (Chapter 2). Chapter 3 considers the embodied self in the context of blood and organ donations and this is extended further in Chapter 4, ...
Research Interests: Law and Medical Law
Research Interests:
Research Interests: Information Systems, Health Sciences, Epidemiology, Research Methodology, Primary Health Care, and 25 moreHealth Care Administration, International Cooperation, Health Services Research, Health Administration, Adolescent, Multidisciplinary, Database Management Systems, Transparency, Library and Information Studies, Humans, Consensus, Female, Male, Observational Research, Big Data, Reporting, Data Collection, Registries, PLoS one, Aged, Middle Aged, Adult, Public health systems and services research, Reporting guideline, and Medical Records
Recent developments in the US, Europe and New Zealand have raised the issue of removal of conditions from newborn screening panels. While decisions regarding the removal of health care may be predicated on questions of evidence of harm... more
Recent developments in the US, Europe and New Zealand have raised the issue of removal of conditions from newborn screening panels. While decisions regarding the removal of health care may be predicated on questions of evidence of harm and benefit, these processes also raise important epistemological questions pertaining to the construction of evidence, and the socio-political nature of applying evidence in clinical practice. In this presentation I explore these issues and argue that the inclusion of values as part of the decision-making process will increase transparency, and facilitate discussion of best practice.
Research Interests:
Background: To date there is no established consensus of assessment criteria for evaluating research ethics review. Methods: We conducted a scoping review of empirical research assessing ethics review processes in order to identify... more
Background: To date there is no established consensus of assessment criteria for evaluating research ethics review.
Methods: We conducted a scoping review of empirical research assessing ethics review processes in order to identify common elements assessed, research foci, and research gaps to aid in the development of assessment criteria. Electronic searches of Ovid Medline, PsychInfo, and the Cochrane DSR, ACP Journal Club, DARE, CCTR, CMR, HTA, and NHSEED, were conducted. After de-duplication, 4234 titles and abstracts were reviewed. Altogether 4036 articles were excluded following screening of titles, abstracts and full text. A total of 198 articles included for final data extraction.
Results: Few studies originated from outside North America and Europe. No study reported using an underlying theory or framework of quality/effectiveness to guide study design or analyses. We did not identify any studies that had involved a controlled trial - randomised or otherwise – of ethics review procedures or processes. Studies varied substantially with respect to outcomes assessed, although tended to focus on structure and timeliness of ethics review.
Discussion: Our findings indicate a lack of consensus on appropriate assessment criteria, exemplified by the varied study outcomes identified, but also a fragmented body of research. To date research has been largely quantitative, with little attention given to stakeholder experiences, and is largely cross sectional. A lack of longitudinal research to date precludes analyses of change or assessment of quality improvement in ethics review.
Methods: We conducted a scoping review of empirical research assessing ethics review processes in order to identify common elements assessed, research foci, and research gaps to aid in the development of assessment criteria. Electronic searches of Ovid Medline, PsychInfo, and the Cochrane DSR, ACP Journal Club, DARE, CCTR, CMR, HTA, and NHSEED, were conducted. After de-duplication, 4234 titles and abstracts were reviewed. Altogether 4036 articles were excluded following screening of titles, abstracts and full text. A total of 198 articles included for final data extraction.
Results: Few studies originated from outside North America and Europe. No study reported using an underlying theory or framework of quality/effectiveness to guide study design or analyses. We did not identify any studies that had involved a controlled trial - randomised or otherwise – of ethics review procedures or processes. Studies varied substantially with respect to outcomes assessed, although tended to focus on structure and timeliness of ethics review.
Discussion: Our findings indicate a lack of consensus on appropriate assessment criteria, exemplified by the varied study outcomes identified, but also a fragmented body of research. To date research has been largely quantitative, with little attention given to stakeholder experiences, and is largely cross sectional. A lack of longitudinal research to date precludes analyses of change or assessment of quality improvement in ethics review.
Research Interests:
Background: Translational research is the direct application of basic and applied research to patient care. It is estimated that there are at least 2,000 different skin diseases, thus there are considerable challenges in seeking to... more
Background: Translational research is the direct application of basic and applied research to patient care. It is estimated that there are at least 2,000 different skin diseases, thus there are considerable challenges in seeking to undertake research on
each of these disorders.
Objective: This eDelphi exercise was conducted in order to generate a list of translational dermatology research questions which are regarded as a priority for further investigations.
Results: During the first phase of the eDelphi, 228 research questions were generated by an expert panel which included clinical academic dermatologists, clinical dermatologists, non-clinical scientists, dermatology trainees and representatives from patient support groups. Following completion of the second and third phases, 40 questions on inflammatory skin disease, 20 questions on structural skin disorders /
genodermatoses, 37 questions on skin cancer and 8 miscellaneous questions were designated as priority translational dermatology research questions (PRQs). In addition to PRQs on a variety of disease areas (including multiple PRQs on psoriasis, eczema, squamous cell carcinoma (SCC) and melanoma), there were a number of cross-cutting
themes which identified a need to investigate mechanisms / pathogenesis of disease and the necessity to improve treatments for patients with skin disease. Conclusion: It is
predicted that this list of PRQs will help to provide a strategic direction for translational dermatology research in the UK and that addressing this list of questions will ultimately
provide clinical benefit for substantial numbers of subjects with skin disorders.
each of these disorders.
Objective: This eDelphi exercise was conducted in order to generate a list of translational dermatology research questions which are regarded as a priority for further investigations.
Results: During the first phase of the eDelphi, 228 research questions were generated by an expert panel which included clinical academic dermatologists, clinical dermatologists, non-clinical scientists, dermatology trainees and representatives from patient support groups. Following completion of the second and third phases, 40 questions on inflammatory skin disease, 20 questions on structural skin disorders /
genodermatoses, 37 questions on skin cancer and 8 miscellaneous questions were designated as priority translational dermatology research questions (PRQs). In addition to PRQs on a variety of disease areas (including multiple PRQs on psoriasis, eczema, squamous cell carcinoma (SCC) and melanoma), there were a number of cross-cutting
themes which identified a need to investigate mechanisms / pathogenesis of disease and the necessity to improve treatments for patients with skin disease. Conclusion: It is
predicted that this list of PRQs will help to provide a strategic direction for translational dermatology research in the UK and that addressing this list of questions will ultimately
provide clinical benefit for substantial numbers of subjects with skin disorders.
Research Interests:
Objective: Routinely collected health data, collected for administrative and clinical purposes, without specific a priori research questions, are increasingly used for observational, comparative effectiveness, health services research,... more
Objective: Routinely collected health data, collected for administrative and clinical purposes, without specific a priori research questions, are increasingly used for observational, comparative effectiveness, health services research, and clinical trials. The rapid evolution and availability of routinely collected data for research has brought to light specific issues not addressed by existing reporting guidelines. The aim of the present project was to determine the priorities of stakeholders in order to guide the development of the REporting of studies Conducted using Observational Routinely-collected health Data (RECORD) statement.
Methods: Two modified electronic Delphi surveys were sent to stakeholders. The first determined themes deemed important to include in the RECORD statement, and was analyzed using qualitative methods. The second determined quantitative prioritization of the themes based on categorization of manuscript headings. The surveys were followed by a meeting of RECORD working committee, and re-engagement with stakeholders via an online commentary period.
Results: The qualitative survey (76 responses of 123 surveys sent) generated 10 overarching themes and 13 themes derived from existing STROBE categories. Highest-rated overall items for inclusion were: Disease/exposure identification algorithms; Characteristics of the population included in databases; and Characteristics of the data. In the quantitative survey (71 responses of 135 sent), the importance assigned to each of the compiled themes varied depending on the manuscript section to which they were assigned. Following the working committee meeting, online ranking by stakeholders provided feedback and resulted in revision of the final checklist.
Conclusions: The RECORD statement incorporated the suggestions provided by a large, diverse group of stakeholders to create a reporting checklist specific to observational research using routinely collected health data. Our findings point to unique aspects of studies conducted with routinely collected health data and the perceived need for better reporting of methodological issues.
Methods: Two modified electronic Delphi surveys were sent to stakeholders. The first determined themes deemed important to include in the RECORD statement, and was analyzed using qualitative methods. The second determined quantitative prioritization of the themes based on categorization of manuscript headings. The surveys were followed by a meeting of RECORD working committee, and re-engagement with stakeholders via an online commentary period.
Results: The qualitative survey (76 responses of 123 surveys sent) generated 10 overarching themes and 13 themes derived from existing STROBE categories. Highest-rated overall items for inclusion were: Disease/exposure identification algorithms; Characteristics of the population included in databases; and Characteristics of the data. In the quantitative survey (71 responses of 135 sent), the importance assigned to each of the compiled themes varied depending on the manuscript section to which they were assigned. Following the working committee meeting, online ranking by stakeholders provided feedback and resulted in revision of the final checklist.
Conclusions: The RECORD statement incorporated the suggestions provided by a large, diverse group of stakeholders to create a reporting checklist specific to observational research using routinely collected health data. Our findings point to unique aspects of studies conducted with routinely collected health data and the perceived need for better reporting of methodological issues.
Research Interests:
The language of ‘personalized medicine’ and ‘personal genomics’ has now entered the common lexicon. The idea of personalized medicine is the integration of genomic risk assessment alongside other clinical investigations. Consistent with... more
The language of ‘personalized medicine’ and ‘personal genomics’ has now entered the common lexicon. The idea of personalized medicine is the integration of genomic risk assessment alongside other clinical investigations. Consistent with this approach, testing is delivered by health care professionals who are not medical geneticists, and where results represent risks, as opposed to clinical diagnosis of disease, to be interpreted alongside the entirety of a patient’s health and medical data. In this review we consider the evidence concerning the application of such personalized genomics within the context of population screening, and potential implications that arise from this. We highlight two general approaches which illustrate potential uses of genomic information in screening. The first is a narrowly targeted approach in which genetic profiling is linked with standard population-based screening for diseases; the second is a broader targeting of variants associated with multiple single gene disorders, performed opportunistically on patients being investigated for unrelated conditions. In doing so we consider the organisation and evaluation of tests and services, the challenge of interpretation with less targeted testing, professional confidence, barriers in practice, and education needs. We conclude by discussing several issues pertinent to health policy, namely; avoiding the conflation of genetics with biological determinism, resisting the ‘technological imperative’, due consideration of the organisation of screening services, the need for professional education, as well as informed decision making and public understanding.
Research Interests:
Introduction: NBS involves testing a small sample of blood taken from the heel of the newborn for a number of serious and life-limiting conditions. In Canada, newborn screening programs fall under provincial and territorial jurisdiction... more
Introduction: NBS involves testing a small sample of blood taken from the heel of the newborn for a number of serious and life-limiting conditions. In Canada, newborn screening programs fall under provincial and territorial jurisdiction with no federal coordination. To date, we know very little about the underlying beliefs around different consent practices or how terminology is interpreted by different individuals. Differences in attitudes may have important healthcare consequences. This study will empirical data comparing stakeholder opinions on their understanding of consent-related terminology, the perceived applicability of different consent approaches to newborn screening, and the requirements of these different approaches.
Methods and Analysis: Parents, healthcare professionals and policy makers will be recruited in the provinces of Ontario and Newfoundland and Labrador. Parents will be identified through records held by each provincial screening program. Healthcare professionals will be purposively sampled on the basis of engagement with newborn screening. Within each province we will identify policy makers who have policy analysis or advisory responsibilities relating to newborn bloodspot screening. Data collection will be by qualitative interviews. We will conduct 20 interviews with parents of young children, 10 interviews with key healthcare professionals across the range of appropriate specialties and 10 with policy-makers at each site (40 per site, total, N=80). The examination of the transcripts will follow a thematic analysis approach. Recruitment started in June 2014 and is expected to be complete by June 2015.
Ethics and Dissemination: This study received ethics approval from the Ottawa Health Science Network Research Ethics Board, the Children’s Hospital of Eastern Ontario Research Ethics Board (both Ontario), and the Health Research Ethics Authority (Newfoundland and Labrador).
Results will be reported in peer-reviewed publications and conference presentations. The results will have specific application to the development of parent education materials for newborn screening.
Methods and Analysis: Parents, healthcare professionals and policy makers will be recruited in the provinces of Ontario and Newfoundland and Labrador. Parents will be identified through records held by each provincial screening program. Healthcare professionals will be purposively sampled on the basis of engagement with newborn screening. Within each province we will identify policy makers who have policy analysis or advisory responsibilities relating to newborn bloodspot screening. Data collection will be by qualitative interviews. We will conduct 20 interviews with parents of young children, 10 interviews with key healthcare professionals across the range of appropriate specialties and 10 with policy-makers at each site (40 per site, total, N=80). The examination of the transcripts will follow a thematic analysis approach. Recruitment started in June 2014 and is expected to be complete by June 2015.
Ethics and Dissemination: This study received ethics approval from the Ottawa Health Science Network Research Ethics Board, the Children’s Hospital of Eastern Ontario Research Ethics Board (both Ontario), and the Health Research Ethics Authority (Newfoundland and Labrador).
Results will be reported in peer-reviewed publications and conference presentations. The results will have specific application to the development of parent education materials for newborn screening.
Research Interests:
In this article we review the literature regarding the public understanding of the potential benefits and burdens of expanded newborn bloodspot screening. We draw attention to broadened notions of benefit that go beyond early... more
In this article we review the literature regarding the public understanding of the potential benefits and burdens of expanded newborn bloodspot screening. We draw
attention to broadened notions of benefit that go beyond early identification of asymptomatic individuals and interventions to reduce morbidity or mortality, and
include benefits gained by families through knowledge that may facilitate life choices, as well as gains generated by avoiding diagnostic delays. We also reflect on burdens
such as increasing false-positive results and parental anxiety, together with risks of overdiagnosis when the natural history of a condition is poorly understood. We conclude that expanded notions of benefit and burden bring with them implications for parental consent and confidentiality and the secondary use of bloodspots.
attention to broadened notions of benefit that go beyond early identification of asymptomatic individuals and interventions to reduce morbidity or mortality, and
include benefits gained by families through knowledge that may facilitate life choices, as well as gains generated by avoiding diagnostic delays. We also reflect on burdens
such as increasing false-positive results and parental anxiety, together with risks of overdiagnosis when the natural history of a condition is poorly understood. We conclude that expanded notions of benefit and burden bring with them implications for parental consent and confidentiality and the secondary use of bloodspots.
Research Interests:
The sequencing of the human genome and decreasing costs of sequencing technology have led to the notion of ‘personalized medicine’. This has been taken by some authors to indicate that personalized medicine will provide individualized... more
The sequencing of the human genome and decreasing costs of sequencing technology have led to the notion of ‘personalized medicine’. This has been taken by some authors to indicate that personalized medicine will provide individualized treatments solely based on one’s DNA sequence. We argue this is overly optimistic and misconstrues the notion of personalization. Such interpretations fail to account for economic, policy and structural constraints on the delivery of healthcare. Furthermore, notions of individualization based on genomic data potentially take us down the road of genetic reductionism obscuring the role of environmental factors in disease and ill health. We propose that one should see personalized medicine as a way of using personal genomic information to stratify individuals into subpopulations and suggest that personalized medicine be seen within a broader idea of personalized healthcare, reflecting healthcare that integrates personal genomic data into cultural, environmental and personal contexts.
Research Interests:
Background: Atrial fibrillation (AF) is a common cardiac arrhythmia, and leading cause of ischemic stroke. Despite proven effectiveness, warfarin remains an under-used treatment in atrial fibrillation patients. We sought to study, across... more
Background: Atrial fibrillation (AF) is a common cardiac arrhythmia, and leading cause of ischemic stroke. Despite proven effectiveness, warfarin remains an under-used treatment in atrial fibrillation patients. We sought to study, across three physician specialties, a range of factors that have been argued to have a disproportionate effect on treatment decisions.
Methods: Cross-sectional survey of Canadian Family Doctors (FD: n=500), Geriatricians (G: n=149), and Internal Medicine specialists (IMS: n=500). Of these, 1032 physicians were contactable, and 335 completed and usable responses were received. Survey questions and clinical vignettes asked about the frequency with which they see patients with atrial fibrillation, treatment practices, and barriers to the prescription of anticoagulants.
Results: Stated prescribing practices did not significantly differ between physician groups. Falls risk, bleeding risk and poor patient adherence were all highly cited barriers to prescribing warfarin. Fewer geriatricians indicated that history of patient falls would be a reason for not treating with warfarin (G: 47%; FD: 71%; IMS: 72%), and significantly fewer changed reported practice in the presence of falls risk (χ2 (6) = 45.446, p<0.01). Experience of a patient having a stroke whilst not on warfarin had a significant impact on vignette decisions; physicians who had had patients who experienced a stroke were more likely to prescribe warfarin (χ2 (3) =10.7, p=0.013).
Conclusions: Barriers to treatment of atrial fibrillation with warfarin affect physician specialties to different extents. Prior experience of a patient suffering a stroke when not prescribed warfarin is positively associated with intention to prescribe warfarin prescription, even in the presence of falls risk.
Methods: Cross-sectional survey of Canadian Family Doctors (FD: n=500), Geriatricians (G: n=149), and Internal Medicine specialists (IMS: n=500). Of these, 1032 physicians were contactable, and 335 completed and usable responses were received. Survey questions and clinical vignettes asked about the frequency with which they see patients with atrial fibrillation, treatment practices, and barriers to the prescription of anticoagulants.
Results: Stated prescribing practices did not significantly differ between physician groups. Falls risk, bleeding risk and poor patient adherence were all highly cited barriers to prescribing warfarin. Fewer geriatricians indicated that history of patient falls would be a reason for not treating with warfarin (G: 47%; FD: 71%; IMS: 72%), and significantly fewer changed reported practice in the presence of falls risk (χ2 (6) = 45.446, p<0.01). Experience of a patient having a stroke whilst not on warfarin had a significant impact on vignette decisions; physicians who had had patients who experienced a stroke were more likely to prescribe warfarin (χ2 (3) =10.7, p=0.013).
Conclusions: Barriers to treatment of atrial fibrillation with warfarin affect physician specialties to different extents. Prior experience of a patient suffering a stroke when not prescribed warfarin is positively associated with intention to prescribe warfarin prescription, even in the presence of falls risk.
Research Interests:
Background: Early childhood immunizations, although vital for preventative health, are painful and often result in fear and distress in infants and young children. Effective pain management strategies for infants during immunizations... more
Background: Early childhood immunizations, although vital for preventative health, are painful and often result in fear and distress in infants and young children. Effective pain management strategies for infants during immunizations include breastfeeding, sweet solutions, and upright front-to-front holding, however it is questionable how much these strategies are used in practice. As there are many You Tube videos of infants being immunized, our aim was to review the content of these videos to ascertain parents’’ and health care professionals’ use of pain management strategies and to assess infant’s pain and distress.
Methods: A systematic review of YouTube videos showing intramuscular injections in infants less than 12 months was completed using the search terms “baby injection” and “baby vaccine” to assess (1) the use of pain management strategies and (2) infant pain and distress. Pain assessment comprised crying incidence, crying duration and pain scores using the FLACC (Face, Legs, Activity, Consolability, Cry) tool.
Results: A total of 142 videos were included and coded by two individual viewers. Most infants received one injection (range of one to six). Almost all (94%) infants cried before or during the injections for a median of 33 seconds (IQR=39), up to 146 seconds. FLACC scores during the immunizations were high, with a median of 10 (IQR=3). No videos showed breastfeeding or use of sucrose/any sweet solutions during the injection/s and only four (3%) videos showed the infants being held in a front-to-front position during the injections. Sixteen (11%) caregivers were not visible at any time during the immunization procedure.
Conclusion: Posted YouTube videos of infants being immunized showed that infants were highly distressed during the procedures. There was no use of breastfeeding or sweet solutions and limited use of upright or front-to-front holding during the injections. This systematic review of YouTube videos of infant immunization will be used as a baseline to evaluate the impact of future knowledge translation interventions using YouTube to improve pain management practices.
Methods: A systematic review of YouTube videos showing intramuscular injections in infants less than 12 months was completed using the search terms “baby injection” and “baby vaccine” to assess (1) the use of pain management strategies and (2) infant pain and distress. Pain assessment comprised crying incidence, crying duration and pain scores using the FLACC (Face, Legs, Activity, Consolability, Cry) tool.
Results: A total of 142 videos were included and coded by two individual viewers. Most infants received one injection (range of one to six). Almost all (94%) infants cried before or during the injections for a median of 33 seconds (IQR=39), up to 146 seconds. FLACC scores during the immunizations were high, with a median of 10 (IQR=3). No videos showed breastfeeding or use of sucrose/any sweet solutions during the injection/s and only four (3%) videos showed the infants being held in a front-to-front position during the injections. Sixteen (11%) caregivers were not visible at any time during the immunization procedure.
Conclusion: Posted YouTube videos of infants being immunized showed that infants were highly distressed during the procedures. There was no use of breastfeeding or sweet solutions and limited use of upright or front-to-front holding during the injections. This systematic review of YouTube videos of infant immunization will be used as a baseline to evaluate the impact of future knowledge translation interventions using YouTube to improve pain management practices.
Research Interests:
Whole genome sequencing makes risk assessment for common diseases a realistic scenario and has led to renewed interest in the use of genetic information for life insurance underwriting. Despite the debate there is little empirical... more
Whole genome sequencing makes risk assessment for common diseases a realistic scenario and has led to renewed interest in the use of genetic information for life insurance underwriting. Despite the debate there is little empirical evidence. There is currently no Canadian legislation that explicitly prohibits access to genetic data for the purposes of underwriting by life insurers, although several recent bills have been introduced for this purpose. In this paper we review the arguments, the evidence and the state of Canadian legislation regarding genetic discrimination and life insurance underwriting. Addressing concerns about the potential for genetic discrimination is not just a question of academic or legal interest. If the public and patients are reticent about who might be able to access genetic information, then they may forego the opportunity of screening or testing and the associated health benefits.
Research Interests:
Objective: Newborn bloodspot screening is an internationally established public health measure. Despite this, there is a paucity of information relating to the decision-making process that parents go through when accepting newborn... more
Objective: Newborn bloodspot screening is an internationally established public health measure. Despite this, there is a paucity of information relating to the decision-making process that parents go through when accepting newborn screening. This is important as screening panels are expanding; potentially leading to an increasing amount of complex information. This study sought to understand the factors that influence parental decisions and roles they play in the decision-making process
Patients and Methods: Qualitative thematic evaluation of semi structured interviews with parents whose children had recently undergone newborn screening in the Merseyside and Cheshire region of England, UK
Results: Eighteen interviews with first time parents (n=12) and those with previous children (n=6). Seven factors were identified as being either explicitly or implicitly related to parental decision-making: Experience, Attitudes to medicine, Information-seeking behaviour, Perceived knowledge, Attitudes to screening, and Perceived choice, all of which ultimately impact on Perceived decisional quality.
Conclusions: These results indicate that while content is important, other contextual factors such as personal experience, perceived choice, and general attitudes toward medicine, are also highly influential. In particular, relationships with key healthcare professionals are central to information collection, attitudes toward screening, and the level of deliberation that is invested in decisions to accept newborn bloodspot screening.
Patients and Methods: Qualitative thematic evaluation of semi structured interviews with parents whose children had recently undergone newborn screening in the Merseyside and Cheshire region of England, UK
Results: Eighteen interviews with first time parents (n=12) and those with previous children (n=6). Seven factors were identified as being either explicitly or implicitly related to parental decision-making: Experience, Attitudes to medicine, Information-seeking behaviour, Perceived knowledge, Attitudes to screening, and Perceived choice, all of which ultimately impact on Perceived decisional quality.
Conclusions: These results indicate that while content is important, other contextual factors such as personal experience, perceived choice, and general attitudes toward medicine, are also highly influential. In particular, relationships with key healthcare professionals are central to information collection, attitudes toward screening, and the level of deliberation that is invested in decisions to accept newborn bloodspot screening.
Research Interests:
Including low penetrance genomic variants in population-based screening might enable personalization of screening intensity and follow up. The application of genomics in this way requires formal evaluation. Even if clinically beneficial,... more
Including low penetrance genomic variants in population-based screening might enable personalization of screening intensity and follow up. The application of genomics in this way requires formal evaluation. Even if clinically beneficial, uptake would still depend on the attitudes of target populations. We developed a deliberative workshop on two hypothetical applications (in colorectal cancer and newborn screening) in which we applied stepped, neutrally-framed, information sets. Data were collected using non-participant observation, free-text comments by individual participants and a structured survey. Qualitative data were transcribed and analyzed using thematic content analysis. Eight workshops were conducted with 170 individuals (120 colorectal cancer screening and 50 newborn screening for type 1 diabetes). The use of information sets promoted informed deliberation. In both contexts, attitudes appeared to be heavily informed by assessments of the likely validity of the test results, and its personal and health care utility. Perceived benefits included the potential for early intervention, prevention, and closer monitoring while concerns related to costs, education needs regarding the probabilistic nature of risk, the potential for worry, and control of access to personal genomic information. Differences between the colorectal cancer and newborn screening groups appeared to reflect different assessments of potential personal utility, particularly regarding prevention.
""Introduction: Newborn bloodspot screening (NBS) programs generate an ethical tension between promoting the uptake of effective public health measures and facilitating informed consent from individuals. Aim: To explore the factors that... more
""Introduction: Newborn bloodspot screening (NBS) programs generate an ethical tension between promoting the uptake of effective public health measures and facilitating informed consent from individuals.
Aim: To explore the factors that affect parental perceptions of decision quality when accepting NBS
Methods: Survey of parents with children screened in 2008 (n=154, 32% response rate). Questions were based on previous research and existing measures. The primary outcome was decision quality. Predictors were latent constructs of Attitudes to Medicine, Perceived Knowledge, Attitudes to Screening, and Perceived Choice. Responses were analysed using structural equation modelling.
Results: Increases in perceived choice and positive attitudes towards screening improved decision quality. Perceived knowledge had a significant and positive relationship with attitudes to screening (0.375, P<0.01) as did perceived choice on perceived knowledge (0.806, P<0.01). Attitudes to screening were also significantly influenced by attitudes to medicine, although less so than the effect of perceived knowledge. The model had good fit on all indices (χ2 = 61.396, df=48, p = 0.093; CFI = 0.979; RMSEA = 0.043).
Conclusions: Our results implicate the presentation of screening as a key determinant of decision quality both in terms of the immediate information regarding the potential benefits and risks, but also the way in which consent processes are managed. If we want to better understand parent decision making we need to go beyond analyses of information content, or parental recall of this, but consider the context in which screening is provided.
""
Aim: To explore the factors that affect parental perceptions of decision quality when accepting NBS
Methods: Survey of parents with children screened in 2008 (n=154, 32% response rate). Questions were based on previous research and existing measures. The primary outcome was decision quality. Predictors were latent constructs of Attitudes to Medicine, Perceived Knowledge, Attitudes to Screening, and Perceived Choice. Responses were analysed using structural equation modelling.
Results: Increases in perceived choice and positive attitudes towards screening improved decision quality. Perceived knowledge had a significant and positive relationship with attitudes to screening (0.375, P<0.01) as did perceived choice on perceived knowledge (0.806, P<0.01). Attitudes to screening were also significantly influenced by attitudes to medicine, although less so than the effect of perceived knowledge. The model had good fit on all indices (χ2 = 61.396, df=48, p = 0.093; CFI = 0.979; RMSEA = 0.043).
Conclusions: Our results implicate the presentation of screening as a key determinant of decision quality both in terms of the immediate information regarding the potential benefits and risks, but also the way in which consent processes are managed. If we want to better understand parent decision making we need to go beyond analyses of information content, or parental recall of this, but consider the context in which screening is provided.
""
Research Interests:
In this paper I critique the increasing standardization of obesity. Specifically, I consider two ‘definitional turns’: the way language has been standardized to such an extent that it obscures uncertainty and variation, and the appearance... more
In this paper I critique the increasing standardization of obesity. Specifically, I consider two ‘definitional turns’: the way language has been standardized to such an extent that it obscures uncertainty and variation, and the appearance of objectivity through quantification and standardized measurement. These, I suggest, have fostered a simplified picture of obesity, promoting the classification of weight and thereby facilitating the emergence of the ‘obesity epidemic’. These definitional turns fail to acknowledge the distinctions between fat and mass and intraclass variation within weight categories. A consequence of this process of simplification has been the erroneous application of population level information to individuals in a clinical context, with potentially harmful results.
Research Interests: Sociology, Epidemiology, Language Variation and Change, Obesity, Sociology of Identity, and 10 moreMeasurement and Evaluation, Standards, Sociology of Health, Chronic illness, Reserach Methodology, Classification, BMI, Epidemiological methods, Body mass index (BMI), and Poverty, Fast Food, and the Obesity Epidemic
Research Interests:
In his article “The Case Against Ethics Review in the Social Sciences” Schrag asserts that the social sciences should not be subject to ethical review. In his paper, he recounts a number of examples where ethical review has seemingly... more
In his article “The Case Against Ethics Review in the Social Sciences” Schrag asserts that the social sciences should not be subject to ethical review. In his paper, he recounts a number of examples where ethical review has seemingly failed. He further suggests some alternative models for dealing with ethical review in the social sciences.
We contend that whilst social scientists may complain that their research poses rare and limited harms, and is sometimes incorrectly reviewed, this does not preclude social science research from ethical review. Rather than a case against ethics review in the social sciences, we would offer that what Schrag does demonstrate are failures of practice that point to a need
for improved standards and guidance that can inform the education of research ethics committees.
We suggest that standards and guidelines are needed to inform better education of ethics committees on the specific ethical issues that social sciences raise. We suggest that models of developing standards for ethics committees about challenging designs exist, and highlight recent work around the ethical review of cluster randomized trials (CRTs), which could more effectively address the problems Schrag identifies.
However, we find ourselves in agreement with Schrag regarding the need to evaluate the ethics review process and the current paucity of data as to the 'quality' of ethics review.
We contend that whilst social scientists may complain that their research poses rare and limited harms, and is sometimes incorrectly reviewed, this does not preclude social science research from ethical review. Rather than a case against ethics review in the social sciences, we would offer that what Schrag does demonstrate are failures of practice that point to a need
for improved standards and guidance that can inform the education of research ethics committees.
We suggest that standards and guidelines are needed to inform better education of ethics committees on the specific ethical issues that social sciences raise. We suggest that models of developing standards for ethics committees about challenging designs exist, and highlight recent work around the ethical review of cluster randomized trials (CRTs), which could more effectively address the problems Schrag identifies.
However, we find ourselves in agreement with Schrag regarding the need to evaluate the ethics review process and the current paucity of data as to the 'quality' of ethics review.
Research Interests:
Objective: To investigate how parents select and use information sources when considering newborn bloodspot screening Methods: Mixed methods approach using semi-structured interviews [n=18] and a selfcompletion postal questionnaire... more
Objective: To investigate how parents select and use information sources when considering newborn bloodspot screening
Methods: Mixed methods approach using semi-structured interviews [n=18] and a selfcompletion
postal questionnaire [n=154] conducted with parents of children who had undergone newborn bloodspot screening. Qualitative data was assessed using a thematic analysis approach with quantitative data analyzed using multinomial logistic
regression.
Results: Parents used a limited range of information. In the UK, maternity services are largely delivered by the midwife and the healthcare practitioner was the main information source for parents, with only half of parents using official health service
leaflets. Barriers included the provision of information post-natally and with other nonhealthcare
materials. Neither number of children, age group, education level, nor income were significantly associated with the number of information sources used. Nor were they associated with the information source indicated as most important.
Conclusion: The midwife is well placed to act as a gatekeeper for parents seekinginformation about newborn bloodspot screening. Even when additional sources are used, the midwife remains a prominent source of information. Furthermore, the use of written materials is dependent upon appropriate delivery and consequently delivery is essential to information use.
Methods: Mixed methods approach using semi-structured interviews [n=18] and a selfcompletion
postal questionnaire [n=154] conducted with parents of children who had undergone newborn bloodspot screening. Qualitative data was assessed using a thematic analysis approach with quantitative data analyzed using multinomial logistic
regression.
Results: Parents used a limited range of information. In the UK, maternity services are largely delivered by the midwife and the healthcare practitioner was the main information source for parents, with only half of parents using official health service
leaflets. Barriers included the provision of information post-natally and with other nonhealthcare
materials. Neither number of children, age group, education level, nor income were significantly associated with the number of information sources used. Nor were they associated with the information source indicated as most important.
Conclusion: The midwife is well placed to act as a gatekeeper for parents seekinginformation about newborn bloodspot screening. Even when additional sources are used, the midwife remains a prominent source of information. Furthermore, the use of written materials is dependent upon appropriate delivery and consequently delivery is essential to information use.
Research Interests: Information Retrieval, Mixed Methods, Qualitative methodology, Genomics, Midwifery, and 11 moreSurvey Research, Mixed Methods Research, Survey, Interviews, Web Surveys, Community genetics, Leaflet Design, Newborn Screening, Online Surveys, Web Questionnaire Design, and Population GeneticsxPublic Health EthicsxMixed MethodologiesxGeneticsxStructural Equation ModelingxPublic HealthxInformed ConsentxMedical EthicsxQualitative methodologyxMixed Methods (Sociology)xMixed MethodsxMixed Methods Researchx
Newborn screening is the program through which newborn babies are screened for a variety of conditions shortly after birth. Programs such as this are individually oriented but resemble traditional public health programs because (a) they... more
Newborn screening is the program through which newborn babies are screened for a variety of conditions shortly after birth. Programs such as this are individually oriented but resemble traditional public health programs because (a) they are targeted at large groups of the population and (b) they are offered as preventive interventions to a population considered healthy. As such an ethical tension exists between the goals of promoting high uptake of supposedly ‘effective’ population oriented programs and the goal of promoting genuinely informed decision-making. There is, however, a lack of understanding with regard to how parents experience the tension between promoting uptake and facilitating informed choice. In this paper I address this issue and present data to show how aspects of the timing, presentation of information and procedural routinisation of newborn screening serves to impact on the decisions made by parents.
Research Interests: Ethics, Bioethics, Research Ethics, Qualitative methodology, Population Genetics, and 13 morePublic Health Ethics, Education Research Ethics, Informed Consent, Medical Ethics, Public Choice, Public Health, UK, Newborn hearing screening programs, Cross Cultural Research, Value Ethics, Population GeneticsxPublic Health EthicsxMixed MethodologiesxGeneticsxStructural Equation ModelingxPublic HealthxInformed ConsentxMedical EthicsxQualitative methodologyxMixed Methods (Sociology)xMixed MethodsxMixed Methods Researchx, Journal of Medical Ethics, and Value Exchange
Research Interests:
Research Interests:
Research Interests:
Research Interests:
Research Interests:
The UK has a long established programme of newborn bloodspot screening. This operates under a model of informed choice. Understanding is central to the `informed’ element of an informed choice yet it is rarely assessed. To date most... more
The UK has a long established programme of newborn bloodspot screening. This operates under a model of informed choice. Understanding is central to the `informed’ element of an informed choice yet it is rarely assessed. To date most research within the context of newborn bloodspot screening has focussed on parental recall of information. In this paper I argue that simplistic assessments of knowledge through recall fail to reflect more complex notions of understanding. In support of this contention I draw on qualitative interviews with parents of children who have undergone newborn bloodspot screening.
Research Interests:
Outcome measurement in clinical genetics is problematic because the patient benefits are difficult to measure. The aim in this qualitative grounded theory study was to develop a theoretical framework describing the patient benefits from... more
Outcome measurement in clinical genetics is problematic
because the patient benefits are difficult to measure. The aim in this qualitative grounded theory study was to develop a theoretical framework describing the patient benefits from
using clinical genetics services. Seven focus groups and 19 interviews were conducted with patients, patient group
representatives, and health professionals. Data analysis resulted in construction of a model of empowerment summarizing the patient benefits from using clinical
genetics services. Empowerment is similar to the concept of perceived personal control (PPC), and a measure of PPC has been developed for use in evaluations of clinical genetics
services. However, empowerment includes some benefits not captured by PPC related to empowerment of other at risk relatives, and future generations.
because the patient benefits are difficult to measure. The aim in this qualitative grounded theory study was to develop a theoretical framework describing the patient benefits from
using clinical genetics services. Seven focus groups and 19 interviews were conducted with patients, patient group
representatives, and health professionals. Data analysis resulted in construction of a model of empowerment summarizing the patient benefits from using clinical
genetics services. Empowerment is similar to the concept of perceived personal control (PPC), and a measure of PPC has been developed for use in evaluations of clinical genetics
services. However, empowerment includes some benefits not captured by PPC related to empowerment of other at risk relatives, and future generations.
Objective: This systematic review aimed to inform researchers and policymakers about what validated outcome measures are available to evaluate clinical genetics services (CGS) and the need for new measures. Methods: Validated outcome... more
Objective: This systematic review aimed to inform researchers
and policymakers about what validated outcome measures
are available to evaluate clinical genetics services (CGS)
and the need for new measures.
Methods: Validated outcome measures used to evaluate CGS
were identified from a systematic literature review. Subjective
outcome measures were assumed to have been validated only
if some form of psychometric assessment was reported.
Results: A total of 1688 titles and abstracts were identified,
and 61 articles met the inclusion criteria for the final review,
which covered 67 validated outcome measures. There were
37 nongenetics-specific and 30 genetics-specific measures
identified. No single validated outcome measure encompassed
all potential patient benefits from using a CGS. A variety of different domains were identified, including anxiety and depression, coping, decision-making, distress, family environment, health status, knowledge, mood, perception
of risk, perceived personal control, psychological impact, quality of life, satisfaction and expectations, self esteem,
spiritual well-being, and worry. Some important aspects of patient benefit from CGS are not covered by existing
outcome measures.
Conclusions: New research is necessary to develop the array
of outcome measures required to quantify the benefits CGS
offer patients living with the effects of genetic conditions.
These need to be suitable for use in prospective evaluation
studies to provide robust evidence for decision-makers
to inform service development and commissioning. This
includes prioritization of the existing validated outcome measures in terms of their usefulness and relevance to the measurement and valuation of patient benefits from a CGS.
Keywords: clinical genetics services, decision-making, measurement, outcomes research, systematic review.
and policymakers about what validated outcome measures
are available to evaluate clinical genetics services (CGS)
and the need for new measures.
Methods: Validated outcome measures used to evaluate CGS
were identified from a systematic literature review. Subjective
outcome measures were assumed to have been validated only
if some form of psychometric assessment was reported.
Results: A total of 1688 titles and abstracts were identified,
and 61 articles met the inclusion criteria for the final review,
which covered 67 validated outcome measures. There were
37 nongenetics-specific and 30 genetics-specific measures
identified. No single validated outcome measure encompassed
all potential patient benefits from using a CGS. A variety of different domains were identified, including anxiety and depression, coping, decision-making, distress, family environment, health status, knowledge, mood, perception
of risk, perceived personal control, psychological impact, quality of life, satisfaction and expectations, self esteem,
spiritual well-being, and worry. Some important aspects of patient benefit from CGS are not covered by existing
outcome measures.
Conclusions: New research is necessary to develop the array
of outcome measures required to quantify the benefits CGS
offer patients living with the effects of genetic conditions.
These need to be suitable for use in prospective evaluation
studies to provide robust evidence for decision-makers
to inform service development and commissioning. This
includes prioritization of the existing validated outcome measures in terms of their usefulness and relevance to the measurement and valuation of patient benefits from a CGS.
Keywords: clinical genetics services, decision-making, measurement, outcomes research, systematic review.
There is limited evidence about what process attributes of clinical genetics services may be highly valued by patients and service providers. The aim in this qualitative grounded theory study was to explore what process attributes may be... more
There is limited evidence about what process attributes of clinical genetics services may be highly valued by patients and service providers. The aim in this qualitative grounded theory study was to explore what process attributes may be highly valued by those stakeholders. Seven focus groups (n¼33) and nineteen one-to-one interviews were conducted (total sample size¼52). Five process attributes were identified as highly valued by patients and health professionals: (1) local and accessible services (2) open access and follow-up, (3) coordinated, tailored family care, (4) quality of the patient–clinician relationship and (5) time to talk. These findings will be useful in designing models of service delivery that could be tested in intervention studies.
The aim of this qualitative study was to explore the emotional effects that may be common to many genetic conditions, or risk of genetic conditions, that could be appropriately targeted by clinical genetics services. The study sample... more
The aim of this qualitative study was to explore the
emotional effects that may be common to many genetic
conditions, or risk of genetic conditions, that could be
appropriately targeted by clinical genetics services. The
study sample comprised 52 individuals. Seven focus groups
with patients of clinical genetics services, their representatives from patient support organizations and genetics healthcare providers were conducted. Focus groups were supplemented by 19 face-to-face interviews with patients
and patient group representatives. Focus groups and interviews were audio taped, transcribed in full, and analyzed
using the constant comparative method. Eight emotional
effects of genetic diseases were identified: anxiety, worry
about risks to children, guilt, anger, uncertainty, sadness and
grief, depression, and redemptive adjustment. Two factors
were identified that could modify the emotional effects; these were variability of genetic diseases, and lack of diagnosis/inappropriate care. Despite many negative effects
of genetic disease being identified, results also suggest that
redemptive adjustment is possible where a genetic condition
is present in a family. Interventions designed to (1) adjust the
modifying conditions and (2) help manage the emotional
effects may facilitate adjustment and improve patient outcomes.
emotional effects that may be common to many genetic
conditions, or risk of genetic conditions, that could be
appropriately targeted by clinical genetics services. The
study sample comprised 52 individuals. Seven focus groups
with patients of clinical genetics services, their representatives from patient support organizations and genetics healthcare providers were conducted. Focus groups were supplemented by 19 face-to-face interviews with patients
and patient group representatives. Focus groups and interviews were audio taped, transcribed in full, and analyzed
using the constant comparative method. Eight emotional
effects of genetic diseases were identified: anxiety, worry
about risks to children, guilt, anger, uncertainty, sadness and
grief, depression, and redemptive adjustment. Two factors
were identified that could modify the emotional effects; these were variability of genetic diseases, and lack of diagnosis/inappropriate care. Despite many negative effects
of genetic disease being identified, results also suggest that
redemptive adjustment is possible where a genetic condition
is present in a family. Interventions designed to (1) adjust the
modifying conditions and (2) help manage the emotional
effects may facilitate adjustment and improve patient outcomes.
Objectives: To explore genetics professionals’ and patients’ views about which outcome domains are most appropriate to measure the patient benefits of using a clinical genetics service. Methods: A postal Delphi survey was sent to: 115... more
Objectives: To explore genetics professionals’ and patients’ views about which outcome domains are most appropriate to
measure the patient benefits of using a clinical genetics service.
Methods: A postal Delphi survey was sent to: 115 consultant geneticists; 162 genetic counsellors; 156 support group representatives;
106 patients. The survey contained 19 outcome domains and respondents assessed the usefulness of each for clinical
genetics services.
Results: The final professional panel comprised 115 genetics healthcare professionals and the patient panel comprised 72
patients. The outcome domains that achieved consensus (at least 75% of panel rated ‘useful’) for the patient and professional panels were: decision-making; knowledge of the genetic condition; perceived personal control; risk perception; satisfaction; meeting expectations; ability to cope; diagnosis accuracy; quality of life. Comparison of the ratings between the professional panel and the patient panel showed there was no statistical difference (χ2, p < 0.01) between the ratings (‘useful’ compared to ‘not useful’) for 14 of the 19 outcome domains but found differences for the perceived usefulness of: level of depression; health status; spiritual well-being; test accuracy; rate of termination.
Conclusions: This Delphi survey identified nine outcome domains which are good starting points to develop a core set of outcome measures for evaluating clinical genetics services.
measure the patient benefits of using a clinical genetics service.
Methods: A postal Delphi survey was sent to: 115 consultant geneticists; 162 genetic counsellors; 156 support group representatives;
106 patients. The survey contained 19 outcome domains and respondents assessed the usefulness of each for clinical
genetics services.
Results: The final professional panel comprised 115 genetics healthcare professionals and the patient panel comprised 72
patients. The outcome domains that achieved consensus (at least 75% of panel rated ‘useful’) for the patient and professional panels were: decision-making; knowledge of the genetic condition; perceived personal control; risk perception; satisfaction; meeting expectations; ability to cope; diagnosis accuracy; quality of life. Comparison of the ratings between the professional panel and the patient panel showed there was no statistical difference (χ2, p < 0.01) between the ratings (‘useful’ compared to ‘not useful’) for 14 of the 19 outcome domains but found differences for the perceived usefulness of: level of depression; health status; spiritual well-being; test accuracy; rate of termination.
Conclusions: This Delphi survey identified nine outcome domains which are good starting points to develop a core set of outcome measures for evaluating clinical genetics services.
Introduction: Newborn bloodspot screening is routinely offered to all newborn babies in Canada. As with many procedures for children, this requires proxy decision-making on the part of the parents. In addition, technical advances have led... more
Introduction: Newborn bloodspot screening is routinely offered to all newborn babies in Canada. As with many procedures for children, this requires proxy decision-making on the part of the parents. In addition, technical advances have led to a situation where the information generated by screening can exceed providers’ capacity to intervene therapeutically. Studies have indicated support for mandated screening in the case of treatable conditions, and a need for consent for those that are not treatable. However, these studies assume that parents have a shared understanding of terms such as informed or implied consent, but also the requirements that the different approaches create. To date, there has been little exploration of the perceived benefits or drawbacks from alternative consent approaches.
Objective: To explore the attitudes of parents towards different consent approaches for newborn bloodspot screening.
Methods: Qualitative interviews with parents in Ontario and Newfoundland & Labrador, Canada.
Results & Conclusion: We will present the results of semi-structured interviews with parents regarding consent practices for newborn bloodspot screening. Specifically, we present results of thematic analyses focussing on parent interpretations of key terms such as informed consent and implied consent, together with evaluations of necessary requirements for different approaches within the newborn screening context. In particular we report perceived differences between these approaches, and practicalities required by the differing approaches to consent.
Objective: To explore the attitudes of parents towards different consent approaches for newborn bloodspot screening.
Methods: Qualitative interviews with parents in Ontario and Newfoundland & Labrador, Canada.
Results & Conclusion: We will present the results of semi-structured interviews with parents regarding consent practices for newborn bloodspot screening. Specifically, we present results of thematic analyses focussing on parent interpretations of key terms such as informed consent and implied consent, together with evaluations of necessary requirements for different approaches within the newborn screening context. In particular we report perceived differences between these approaches, and practicalities required by the differing approaches to consent.
Research Interests:
Introduction: The quality of ethics review is often a bone of contention with trialists. Accreditation typically focuses on administrative requirements rather than assessing the quality of decisions. To date there are no established... more
Introduction: The quality of ethics review is often a bone of contention with trialists. Accreditation typically focuses on administrative requirements rather than assessing the quality of decisions. To date there are no established metrics of quality for research ethics review.
Aim: As a first stage we reviewed the empirical research regarding ethics review. We examined the range and nature of research activity in order to identify key themes, research foci, and research gaps to aid in the planning and commissioning of future research.
Methods: A scoping review of published studies. A study was eligible if it was empirical, considered the ethics review process, was focused on human subjects, and was published in English. Manuscript content was coded by two reviewers.
Results: 197 papers were included for data extraction. Few studies were from outside North America, Europe or Australasia. The most common research methodologies were surveys (N=93) and review of administrative data (N=79). Only two longitudinal studies and one systematic review were identified. The most common subject of study was the review process (N=148) and IRB member views (N=101). Only 7 studies included research participants and only one research sponsors. Main outcomes were: IRB structures (N=105), variation in decisions (N=62), IRB membership (N=61), delays in approvals (N=54). Least studied were participant views (N=4), IRB member knowledge (N=9), and post-approval outcomes (N=23).
Conclusion: To date studies have tended to focus on structure and timeliness of ethics review and there has been a lack of research around participant experiences, particularly in less developed countries or settings. A major limitation to date is the lack of longitudinal research which precludes any analyses of change or assessment of quality improvement in ethics review.
Aim: As a first stage we reviewed the empirical research regarding ethics review. We examined the range and nature of research activity in order to identify key themes, research foci, and research gaps to aid in the planning and commissioning of future research.
Methods: A scoping review of published studies. A study was eligible if it was empirical, considered the ethics review process, was focused on human subjects, and was published in English. Manuscript content was coded by two reviewers.
Results: 197 papers were included for data extraction. Few studies were from outside North America, Europe or Australasia. The most common research methodologies were surveys (N=93) and review of administrative data (N=79). Only two longitudinal studies and one systematic review were identified. The most common subject of study was the review process (N=148) and IRB member views (N=101). Only 7 studies included research participants and only one research sponsors. Main outcomes were: IRB structures (N=105), variation in decisions (N=62), IRB membership (N=61), delays in approvals (N=54). Least studied were participant views (N=4), IRB member knowledge (N=9), and post-approval outcomes (N=23).
Conclusion: To date studies have tended to focus on structure and timeliness of ethics review and there has been a lack of research around participant experiences, particularly in less developed countries or settings. A major limitation to date is the lack of longitudinal research which precludes any analyses of change or assessment of quality improvement in ethics review.
Research Interests:
Background: Atrial fibrillation (AF) is a common cardiac arrhythmia, and leading cause of ischemic stroke. Despite being clinically indicated, warfarin is often underutilized in Atrial Fibrillation patients. Objectives: To understand... more
Background: Atrial fibrillation (AF) is a common cardiac arrhythmia, and leading cause of ischemic stroke. Despite being clinically indicated, warfarin is often underutilized in Atrial Fibrillation patients.
Objectives: To understand the factors that affect these prescribing decisions.
Methods: Cross-sectional survey of Canadian Family Physicians (FP: n=500), Geriatricians (G: n=149), and Internal Medicine specialists (IMS: n=500). Of these,1032 physicians were contactable, and 335 completed and usable responses were received. Physicians were asked about the frequency with which they see patients with atrial fibrillation, prescribing practices, and barriers to the prescription of anticoagulants.
Results: Stated prescribing practices did not significantly differ between physician groups. Falls risk, bleeding risk and poor patient compliance were all highly cited reasons for non-prescription. Fewer geriatricians indicated that patient falls would be a reason for non-prescription (G:47%; FP: 71%; IMS: 72%), and significantly fewer changed reported practice in the presence of falls risk (χ2(6)= 45.446, P<0.001). Experience of a patient having a stroke whilst not on warfarin had a significant impact on vignette decisions; physicians who had had patients who experienced a stroke were more likely to prescribe warfarin (χ2(3)=10.7, P=0.013).
Conclusions: Barriers to warfarin prescription differentially affect differing physician specialties. Moreover, prior experience of a patient suffering a stroke when not prescribed warfarin is positively associated with intention to prescribe warfarin prescription, even in the presence of falls risk.
Objectives: To understand the factors that affect these prescribing decisions.
Methods: Cross-sectional survey of Canadian Family Physicians (FP: n=500), Geriatricians (G: n=149), and Internal Medicine specialists (IMS: n=500). Of these,1032 physicians were contactable, and 335 completed and usable responses were received. Physicians were asked about the frequency with which they see patients with atrial fibrillation, prescribing practices, and barriers to the prescription of anticoagulants.
Results: Stated prescribing practices did not significantly differ between physician groups. Falls risk, bleeding risk and poor patient compliance were all highly cited reasons for non-prescription. Fewer geriatricians indicated that patient falls would be a reason for non-prescription (G:47%; FP: 71%; IMS: 72%), and significantly fewer changed reported practice in the presence of falls risk (χ2(6)= 45.446, P<0.001). Experience of a patient having a stroke whilst not on warfarin had a significant impact on vignette decisions; physicians who had had patients who experienced a stroke were more likely to prescribe warfarin (χ2(3)=10.7, P=0.013).
Conclusions: Barriers to warfarin prescription differentially affect differing physician specialties. Moreover, prior experience of a patient suffering a stroke when not prescribed warfarin is positively associated with intention to prescribe warfarin prescription, even in the presence of falls risk.
Research Interests:
Background: The potential inclusion of genomic risk profiling into population-based screening programs may enable more targeted use of different types and intensities of screening and follow-up. However, the use of genomic profiling... more
Background: The potential inclusion of genomic risk profiling into population-based screening programs may enable more targeted use of different types and intensities of screening and follow-up. However, the use of genomic profiling within screening will depend in part on public attitudes. It is, therefore, important to engage in a scientific understanding of public attitudes and respond to their concerns to ensure the effective and appropriate implementation of these applications. Objectives: To identify (i) general reactions to the idea of incorporating genomic risk profiling into routine screening activities, and (ii) responses to specific issues that may require consideration before implementing genomic risk profiling into routine screening using colorectal cancer (CRC) and newborn bloodspot screening (NBS) as examples. Methods: Eight workshops (5 CRC, 3 NBS) were conducted in Ontario and Newfoundland and Labrador, Canada. Participants were provided information regarding the possible personal, health system and societal implications of the technology. Discussions were recorded using field notes and written responses. Participants also completed a structured survey and indicated, from a list, words that best described their attitudes toward the technology.
Results: Participants (N=170; 120 CRC and 50 NBS) varied in attitude; more participants in the CRC groups indicated that they were “enthusiastic” or “optimistic”, while participants in the NBS workshops were more “worried” or had “mixed feelings”. More NBS participants were concerned that a result indicating increased
risk would cause extra worry compared to those in the CRC workshops (91% vs 49% respectively; p<0.01). Other differences included the relevance of results for their family (89% CRC vs 61% NBS; p<0.01 ). In both contexts concern was expressed regarding who had access to test results and implications for insurance. Conclusion: Consistent with previous studies in genetic testing, public attitudes appeared to be contingent on the context in which the genomic risk profiling technology was applied. Public attitudes to genomic technologies must, therefore, be considered in a nuanced, context-specific manner and broad brush assessments avoided. A one-size generic policy is unlikely to be satisfactory. That being said, concerns over access to test results and implications on for insurance were common to both contexts.
Results: Participants (N=170; 120 CRC and 50 NBS) varied in attitude; more participants in the CRC groups indicated that they were “enthusiastic” or “optimistic”, while participants in the NBS workshops were more “worried” or had “mixed feelings”. More NBS participants were concerned that a result indicating increased
risk would cause extra worry compared to those in the CRC workshops (91% vs 49% respectively; p<0.01). Other differences included the relevance of results for their family (89% CRC vs 61% NBS; p<0.01 ). In both contexts concern was expressed regarding who had access to test results and implications for insurance. Conclusion: Consistent with previous studies in genetic testing, public attitudes appeared to be contingent on the context in which the genomic risk profiling technology was applied. Public attitudes to genomic technologies must, therefore, be considered in a nuanced, context-specific manner and broad brush assessments avoided. A one-size generic policy is unlikely to be satisfactory. That being said, concerns over access to test results and implications on for insurance were common to both contexts.
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"Background: Newborn bloodspot screening (NBS) is an international population health intervention. Despite decades of NBS there is a paucity of data relating to parental information use when making decisions to accept screening. Studies... more
"Background: Newborn bloodspot screening (NBS) is an international population health intervention. Despite decades of NBS there is a paucity of data relating to parental information use when making decisions to accept screening. Studies have noted a range of sources but there is little evidence as to why
parents use certain types of information materials nor the relative importance placed on these. The present study addresses this deficit.
Methods: An exploratory sequential mixed methods approach using semi-structured interviews and a self-completion postal questionnaire.
Results: Consistent with Wilson's (1999) model of information-seeking parents could be distinguished as active-seekers
or passive-receivers of information. In the UK the main contact is the midwife and survey results indicated that the midwife was the principal information source; only half of parents used official leaflets. Barriers to use included provision post-natally and the inclusion with other, non-medical, leaflets and booklets. Multinomial logistic regression confirms the significant effect of the most important source in explaining the number of
information sources used (Likelihood Ratio Chi-square = 19.322, df=6, p=0.004). Passive-receivers, tended to cite their primary healthcare contact (the midwife) as the most important source and were more likely to use only that one source. Active-seekers sought out information not only from different perspectives but from more sources.
Discussion: The main practitioner contact (here the midwife) is the principal source of information for parents, irrespective of information-seeking behaviour, although their perceived importance varied. This person is best placed to act as a gate-keeper for parents seeking information about NBS. Parents should be provided with information in the pre-natal period in order to maximise information uptake. This should be supported by additional written materials. These materials should be clearly referenced."
parents use certain types of information materials nor the relative importance placed on these. The present study addresses this deficit.
Methods: An exploratory sequential mixed methods approach using semi-structured interviews and a self-completion postal questionnaire.
Results: Consistent with Wilson's (1999) model of information-seeking parents could be distinguished as active-seekers
or passive-receivers of information. In the UK the main contact is the midwife and survey results indicated that the midwife was the principal information source; only half of parents used official leaflets. Barriers to use included provision post-natally and the inclusion with other, non-medical, leaflets and booklets. Multinomial logistic regression confirms the significant effect of the most important source in explaining the number of
information sources used (Likelihood Ratio Chi-square = 19.322, df=6, p=0.004). Passive-receivers, tended to cite their primary healthcare contact (the midwife) as the most important source and were more likely to use only that one source. Active-seekers sought out information not only from different perspectives but from more sources.
Discussion: The main practitioner contact (here the midwife) is the principal source of information for parents, irrespective of information-seeking behaviour, although their perceived importance varied. This person is best placed to act as a gate-keeper for parents seeking information about NBS. Parents should be provided with information in the pre-natal period in order to maximise information uptake. This should be supported by additional written materials. These materials should be clearly referenced."
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Introduction: Newborn screening programmes, whilst offered to individuals, resemble traditional public health programmes because (a) they are targeted at large groups of the population and (b) they are offered as preventive interventions... more
Introduction: Newborn screening programmes, whilst offered to individuals, resemble traditional public health programmes because (a) they are targeted at large groups of the population and (b) they are offered as preventive interventions to a population considered healthy. For many programmes this potentially presents an ethical tension between the goal of promoting high uptake of supposedly ‘effective’ population oriented programs and the goal of promoting genuinely informed decision-making.
Methods: I explore this potential tension through an exploratory sequential mixed methods approach using an initial phase of qualitative interviews with parents (n=18) and a subsequent postal questionnaire (n=154). Qualitative data was coded using a thematic analysis approach with survey responses analysed using descriptive statistics and structural equation modelling (SEM).
Results: Interviews indicated that there may be discord between the stated aims of supporting informed choice and the practice of providing a population screening programme. In particular parents referred to aspects of proceduralisation and information presentation as diminishing the perceived availability of choice. Parents also noted aspects of timing that impacted on their ability to make considered informed decisions. Survey results suggested that ability to make a choice was of less concern than the availability of choice with 80% of parents agreeing to some degree that it had been expected that their child have the heel prick and over 30% indicating that they did not feel they had a choice to decline the screening. Perhaps most disconcerting was that over 10% of parents felt that they had not made an informed choice. SEM revealed the importance of this finding with perceived choice having a significant impact on the perceived quality of decision made and a standardised coefficient almost twice as large as the parents'
Methods: I explore this potential tension through an exploratory sequential mixed methods approach using an initial phase of qualitative interviews with parents (n=18) and a subsequent postal questionnaire (n=154). Qualitative data was coded using a thematic analysis approach with survey responses analysed using descriptive statistics and structural equation modelling (SEM).
Results: Interviews indicated that there may be discord between the stated aims of supporting informed choice and the practice of providing a population screening programme. In particular parents referred to aspects of proceduralisation and information presentation as diminishing the perceived availability of choice. Parents also noted aspects of timing that impacted on their ability to make considered informed decisions. Survey results suggested that ability to make a choice was of less concern than the availability of choice with 80% of parents agreeing to some degree that it had been expected that their child have the heel prick and over 30% indicating that they did not feel they had a choice to decline the screening. Perhaps most disconcerting was that over 10% of parents felt that they had not made an informed choice. SEM revealed the importance of this finding with perceived choice having a significant impact on the perceived quality of decision made and a standardised coefficient almost twice as large as the parents'
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“It's frightening to think that you mark your children merely by being yourself. It seems unfair. You can't assume the responsibility for everything you do --or don't do.” Simone de Beauvoir. Empirical data shows disparities in childhood... more
“It's frightening to think that you mark your children merely by being yourself. It seems unfair. You can't assume the responsibility for everything you do --or don't do.” Simone de Beauvoir.
Empirical data shows disparities in childhood obesity incidence on the basis of income, gender and neighbourhood characteristics (Matheson et al., 2008; Harrington et al 2009). Do these findings identify a section of society that are morally culpable for the increase in childhood obesity, or do they point to structural inequities that serve to exacerbate existing inequalities?
The question of responsibility, and particularly parental responsibility, is central to discussions of interventions for childhood obesity. Responsibility may be considered in three distinct ways: causal responsibility, moral responsibility, and blameworthiness (Holm, 2009). Thus whilst parents may be causally responsible, together with others such as the advertising industry, food producers, and government, are they also morally responsible and/or blameworthy?
Empirical data, which shows disparities in childhood obesity incidence may point to a lack of moral responsibility or blameworthiness – at least in some parents.
This paper explores the issue of parental responsibility and suggests that the attribution of responsibility is far more complex than may at first appear and that whilst parents are causally responsible, in many cases the moral responsibility and attribution of blame must fall elsewhere. In particular I consider to what extent the state can be seen as morally responsible and the implications that these conclusions have for interventions in childhood obesity. (244 words)
Empirical data shows disparities in childhood obesity incidence on the basis of income, gender and neighbourhood characteristics (Matheson et al., 2008; Harrington et al 2009). Do these findings identify a section of society that are morally culpable for the increase in childhood obesity, or do they point to structural inequities that serve to exacerbate existing inequalities?
The question of responsibility, and particularly parental responsibility, is central to discussions of interventions for childhood obesity. Responsibility may be considered in three distinct ways: causal responsibility, moral responsibility, and blameworthiness (Holm, 2009). Thus whilst parents may be causally responsible, together with others such as the advertising industry, food producers, and government, are they also morally responsible and/or blameworthy?
Empirical data, which shows disparities in childhood obesity incidence may point to a lack of moral responsibility or blameworthiness – at least in some parents.
This paper explores the issue of parental responsibility and suggests that the attribution of responsibility is far more complex than may at first appear and that whilst parents are causally responsible, in many cases the moral responsibility and attribution of blame must fall elsewhere. In particular I consider to what extent the state can be seen as morally responsible and the implications that these conclusions have for interventions in childhood obesity. (244 words)
Schemes that combine taxation of unhealthy foods with subsidies on healthy foods have been proposed as a policy strategy to tackle diet-related disease. Such schemes may also help reduce health inequalities, as low-income groups are... more
Schemes that combine taxation of unhealthy foods with subsidies on healthy foods have been proposed as a policy strategy to tackle diet-related disease. Such schemes may also help reduce health inequalities, as low-income groups are generally more sensitive to price. However, such strategies may be regressive in their effects on income, since low-income groups’ consumption of energy-dense foods exceeds that of higher-income groups (Friel et al., 2007). This concern is heightened by the existence not just of financial barriers to healthier diets (e.g. Gonzalez-Zapata et al., 2010) but also problems in accessing such foods (Larson et al., 2008) and limited time for food preparation (Slater et al. 2010). Thus, price policies alone may have limited effects on low-income groups’ food choices but exacerbate financial pressures.
We present data from the European IDEFICS study, which provides information on parents’ support for taxation/subsidy schemes. Across all countries studied, support for taxation/subsidy schemes was high and, in addition, significantly higher among low-income than higher-income groups.
Positive attitudes among lower-income groups towards taxation/subsidy schemes lend legitimacy to their use in addressing health inequalities despite concerns about regressivity. Further, they may indicate that individuals expect to respond to price changes by shifting consumption towards healthier foods (as predicted by Jensen & Smed, 2007). This would improve health outcomes while keeping food expenditure roughly equal, alleviating concerns about regressivity.
We conclude by noting several limitations of our argument. Firstly, parental attitudes may not reflect wider public opinion. Second, our data did not capture different ways of implementing such schemes (Waterlander 2010). Third, respondents may be overly optimistic about the ease of changing food consumption. Finally, taxation/subsidy schemes may worsen health outcomes indirectly (e.g. Yaniv et al., 2009).
We present data from the European IDEFICS study, which provides information on parents’ support for taxation/subsidy schemes. Across all countries studied, support for taxation/subsidy schemes was high and, in addition, significantly higher among low-income than higher-income groups.
Positive attitudes among lower-income groups towards taxation/subsidy schemes lend legitimacy to their use in addressing health inequalities despite concerns about regressivity. Further, they may indicate that individuals expect to respond to price changes by shifting consumption towards healthier foods (as predicted by Jensen & Smed, 2007). This would improve health outcomes while keeping food expenditure roughly equal, alleviating concerns about regressivity.
We conclude by noting several limitations of our argument. Firstly, parental attitudes may not reflect wider public opinion. Second, our data did not capture different ways of implementing such schemes (Waterlander 2010). Third, respondents may be overly optimistic about the ease of changing food consumption. Finally, taxation/subsidy schemes may worsen health outcomes indirectly (e.g. Yaniv et al., 2009).
Introduction: There is a trend of increasing weight amongst school-aged children. Studies indicate that up to a quarter of school-aged children may be overweight, with a tenth of these obese. The cost of food has been implicated in these... more
Introduction: There is a trend of increasing weight amongst school-aged children. Studies indicate that up to a quarter of school-aged children may be overweight, with a tenth of these obese. The cost of food has been implicated in these increase, with energy-dense foods tending to be cheapest. Consequently, higher taxes on unhealthy foods and subsidies for healthy foods have been proposed as potential intervention measures. However, the successful implementation of any such policies are likely to be politically susceptible to public acceptance.
Methods: This paper draws on attitude data towards taxation and subsidisation generated from the first phase of the Identification and Prevention of Dietary and Lifestyle-induced Health Effects in Children and Infants (IDEFICS) parental questionnaire.
Results: The results indicate that parents show a high degree of support for taxation and subsidisation of food products, but that there is significant variation in support between countries.
Conclusion: These findings are consistent with recent data suggesting that public(s) are increasingly supportive of taxation and subsidisation policies yet are in conflict with the attitudes of other key stakeholders who are less supportive of taxation-subsidy policies. The implications of these findings and potential for policy interventions are discussed.
Methods: This paper draws on attitude data towards taxation and subsidisation generated from the first phase of the Identification and Prevention of Dietary and Lifestyle-induced Health Effects in Children and Infants (IDEFICS) parental questionnaire.
Results: The results indicate that parents show a high degree of support for taxation and subsidisation of food products, but that there is significant variation in support between countries.
Conclusion: These findings are consistent with recent data suggesting that public(s) are increasingly supportive of taxation and subsidisation policies yet are in conflict with the attitudes of other key stakeholders who are less supportive of taxation-subsidy policies. The implications of these findings and potential for policy interventions are discussed.
Despite a national programme of newborn bloodspot screening (NBS) being in place since 1969, and operating under a model of informed consent, research has tended to focus on technical knowledge not on how parental decisions are made. This... more
Despite a national programme of newborn bloodspot screening (NBS) being in place since 1969, and operating under a model of informed consent, research has tended to focus on technical knowledge not on how parental decisions are made. This paper presents research investigating parental experiences of NBS with a particular focus on perceptions of choice and notions of informed consent. Parents were identified and recruited through the Merseyside and Cheshire regional screening laboratory, Sure Start Centres and branches of the National Childbirth Trust. Snowballing was then used to identify further parents. Transcribed interviews were coded and drawn together into a thematic analysis. Parents often reported the procedure as being presented as routine rather than optional. Despite a lack of technical knowledge many parents felt they were sufficiently informed of the implications, and in many cases accepted on the basis of trust in professionals and the NHS. These findings suggest that notions of informed consent, with patients requiring technical knowledge of the procedure and basing decisions on this, are not being met. For some these details are not necessarily important and they feel sufficiently informed without specifics. This may well suggest that a reconsideration of constitutes an informed consent is required when considering parental decisions regarding newborn screening.
This paper will take a holistic approach, considering how structural equation modelling (SEM) is to be used within a mixed methods study to investigate the influences on parental decision-making for newborn bloodspot screening, or what is... more
This paper will take a holistic approach, considering how structural equation modelling (SEM) is to be used within a mixed methods study to investigate the influences on parental decision-making for newborn bloodspot screening, or what is commonly known as the heel prick.
The paper will provide an account of the current practice of newborn screening in the UK before discussing the initial qualitative phase of this research. This initial phase will provide not only the variables to be included in the later analysis, but also a theoretical mechanism through which the different influences interact. The analysis of this data will be considered and the process of linking this to quantitative analysis through SEM will be discussed. The paper will conclude by discussing how it is envisaged that SEM will be used, and a number of the issues that will need to be addressed.
The paper will provide an account of the current practice of newborn screening in the UK before discussing the initial qualitative phase of this research. This initial phase will provide not only the variables to be included in the later analysis, but also a theoretical mechanism through which the different influences interact. The analysis of this data will be considered and the process of linking this to quantitative analysis through SEM will be discussed. The paper will conclude by discussing how it is envisaged that SEM will be used, and a number of the issues that will need to be addressed.
Research Interests:
Introduction: Empirical studies of attitudes toward consent practices for newborn screening indicate varied perspectives, depending on jurisdiction. An assumption within the literature is that terminology such as ‘informed consent’ is... more
Introduction: Empirical studies of attitudes toward consent practices for newborn screening indicate varied perspectives, depending on jurisdiction. An assumption within the literature is that terminology such as ‘informed consent’ is consistently interpreted by all stakeholders, and that as a result the differences in expressed opinions are a result of different attitudes toward consent. Recent studies call into question this assumption, and indicate that at least in some cases attitudes may be dependent on individual meaning, which may differ between respondents. This study examines understandings of consent terminology within two divergent newborn bloodspot screening programs in Canada.
Methods and Analysis: Semi-structured interviews were conducted with parents whose children had been offered screening (n=28), healthcare professionals (n=19), and policy decision-makers (n=17). The study was undertaken in parallel at within Ontario and Newfoundland & Labrador. These sites vary in terms of both screening program structure and content, which may be presumed to influence experiences. Interviews were audio-recorded and transcribed verbatim prior to analysis. The examination of the transcripts followed a thematic analysis approach, in which textual data are coded and labelled in an inductive manner.
Results: Terms such as informed consent, implied consent, and standard-of-care were found to have different meanings to individuals. Understandings varied in terms of the perceived level and type of information required, whether authorization by the parent was necessary, as well as documentary evidence required. While variation between individuals was found, no consistent differences were identified between the two sites. For policy decision makers, a lack of formal policy may serve to propagate uncertainty and varied meanings.
Discussion: These data indicate that meaning of terms such as ‘informed consent’ may not be universal, and as such attitudes toward different consent approaches cannot be assumed to be based on consistent conceptualisations of terms. Detailed investigations of meaning are required to unpack the relevant elements upon which stakeholder attitudes toward consent approaches are based.
Methods and Analysis: Semi-structured interviews were conducted with parents whose children had been offered screening (n=28), healthcare professionals (n=19), and policy decision-makers (n=17). The study was undertaken in parallel at within Ontario and Newfoundland & Labrador. These sites vary in terms of both screening program structure and content, which may be presumed to influence experiences. Interviews were audio-recorded and transcribed verbatim prior to analysis. The examination of the transcripts followed a thematic analysis approach, in which textual data are coded and labelled in an inductive manner.
Results: Terms such as informed consent, implied consent, and standard-of-care were found to have different meanings to individuals. Understandings varied in terms of the perceived level and type of information required, whether authorization by the parent was necessary, as well as documentary evidence required. While variation between individuals was found, no consistent differences were identified between the two sites. For policy decision makers, a lack of formal policy may serve to propagate uncertainty and varied meanings.
Discussion: These data indicate that meaning of terms such as ‘informed consent’ may not be universal, and as such attitudes toward different consent approaches cannot be assumed to be based on consistent conceptualisations of terms. Detailed investigations of meaning are required to unpack the relevant elements upon which stakeholder attitudes toward consent approaches are based.
Research Interests:
Newborn bloodspot screening (NBS) involves testing a small sample of blood taken from the heel of a newborn for a number of serious and life-threatening conditions. In Canada, the practice of NBS falls under provincial jurisdiction with... more
Newborn bloodspot screening (NBS) involves testing a small sample of blood taken from the heel of a newborn for a number of serious and life-threatening conditions. In Canada, the practice of NBS falls under provincial jurisdiction with no national coordination. We know little about the actual process of obtaining
informed consent for NBS and how these experiences might differ across provinces or between key stakeholders such as parents and healthcare professionals (HCP). This study will extend an emerging literature on the opinions and experiences of parents and HCPs regarding consent practices to newborn screening in Canada.
Parents' and Healthcare Professionals' Experiences of Consent for Newborn Bloodspot Screening. Available from: https://www.researchgate.net/publication/275520029_Parents%27_and_Healthcare_Professionals%27_Experiences_of_Consent_for_Newborn_Bloodspot_Screening [accessed Apr 27, 2015].
informed consent for NBS and how these experiences might differ across provinces or between key stakeholders such as parents and healthcare professionals (HCP). This study will extend an emerging literature on the opinions and experiences of parents and HCPs regarding consent practices to newborn screening in Canada.
Parents' and Healthcare Professionals' Experiences of Consent for Newborn Bloodspot Screening. Available from: https://www.researchgate.net/publication/275520029_Parents%27_and_Healthcare_Professionals%27_Experiences_of_Consent_for_Newborn_Bloodspot_Screening [accessed Apr 27, 2015].
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Newborn bloodspot screening is one of the oldest and largest population-based screening programs in the world and involves testing blood taken via a heel prick for a number of serious and life limiting conditions. While there has been... more
Newborn bloodspot screening is one of the oldest and largest population-based screening programs in the world and involves testing blood taken via a heel prick for a number of serious and life limiting conditions. While there has been increasing debate about criteria for expanded screening, far less attention has been paid to the exclusion or removal of conditions from within existing panels. This is highly relevant given recent experiences of screening for Krabbe disease in New York: in five years of testing only a handful of cases have been identified at a cost of millions of dollars. In addition, some parents have received results where it remains uncertain if, how, when, or even if symptoms might appear and what could be done. Recent discussion in the field of implementation science has called for greater exploration of issues pertaining to the de-implementation of technologies and specifically “[research] to understand better the other, cognitive or political factors that facilitate or hinder de-implementation.” On the basis of review of existing de-implementation decisions, I explore the ethical and policy issues raised by de-implementation in the context of newborn bloodspot screening.