Large panel-survey data demonstrated country-level and ethnic minority variation in consent for health record linkage

Objectives
To investigate individual, household and country variation in consent to health record linkage.

Study Design and Setting
Data from 50,994 individuals aged 16-74 years recruited to wave 1 of a large UK general purpose household survey (January 2009 – December 2010) were analysed using multi-level logistic regression models.

Results
Overall, 70.7% of respondents consented to record linkage. Younger age, marriage, tenure, car ownership and education were all significantly associated with consent, though there was little deviation from 70% in subgroups defined by these variables. There were small increases in consent rates in individuals with poor health when defined by self-reported long term limiting illness (adjusted OR 1.11; 95%CIs 1.06, 1.16), less so when defined by General Health Questionnaire score (adjusted OR=1.05; 95%CIs 1.00, 1.10), but the range in absolute consent rates between categories was generally less than 10%. Larger differences were observed for those of non-white ethnicity who were 38% less likely to consent (adjusted OR 0.62; 95%CIs 0.59, 0.66). Consent was higher in Scotland than England (adjusted OR 1.17; 95%CIs 1.06, 1.29) but lower in Northern Ireland (adjusted OR 0.56; 95%CIs 0.50, 0.63).

Conclusion
The modest overall level of systematic bias in consent to record linkage provides reassurance for record linkage potential in general purpose household surveys. However, the low consent rates amongst non-white ethnic minority survey respondents will further compound their low survey participation rates. The reason for the country-level variation requires further study.

Canada's Compassionate Care Benefit:Is it an adequate public health response to addressing the issue of caregiver burden in end-of-life care?

Background: An increasingly significant public health issue in Canada, and elsewhere throughout the developed world, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economic consequences. In this article, we specifically examine how Canada's Compassionate Care Benefit (CCB) - a contributory benefits social program aimed at informal P/EOL caregivers - operates as a public health response in sustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects of caregiver burden that are addressed within the population health promotion (PHP) model. Methods. As part of a national evaluation of Canada's Compassionate Care Benefit, 57 telephone interviews were conducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths and weaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software and emerging themes were identified by the research team, with such findings published elsewhere. The purpose of the present analysis was identified after comparing the findings to the literature specific to caregiver burden and public health, after which data was analyzed using the PHP model as a guiding framework. Results: Informal caregivers spoke to several of the determinants of health outlined in the PHP model that are implicated in their burden experience: gender, income and social status, working conditions, health and social services, social support network, and personal health practises and coping strategies. They recognized the need for improving the CCB to better address these determinants. Conclusions: This study, from the perspective of family caregivers, demonstrates that the CCB is not living up to its full potential in sustaining informal P/EOL caregivers. Effort is required to transform the CCB so that it may fulfill the potential it holds for serving as one public health response to caregiver burden that forms part of a healthy public policy that addresses the determinants of this burden. © 2011 Williams et al; licensee BioMed Central Ltd.

Residential segregation, dividing walls and mental health: A population-based record linkage study

Background
Neighbourhood segregation has been described as a fundamental determinant of physical health, but literature on its effect on mental health is less clear. Whilst most previous research has relied on conceptualized measures of segregation, Northern Ireland is unique as it contains physical manifestations of segregation in the form of segregation barriers (or “peacelines”) which can be used to accurately identify residential segregation.
Methods
We used population-wide health record data on over 1.3 million individuals, to analyse the effect of residential segregation, measured by both the formal Dissimilarity Index and by proximity to a segregation barrier, on the likelihood of poor mental health.
Results
Using multi-level logistic regression models we found residential segregation measured by the Dissimilarity Index poses no additional risk to the likelihood of poor mental health after adjustment for area-level deprivation. However, residence in an area segregated by a “peaceline” increases the likelihood of antidepressant medication by 19% (OR=1.19, 95% CI: 1.14, 1.23) and anxiolytic medication by 39% (OR=1.39, 95% CI: 1.32, 1.48), even after adjustment for gender, age, conurbation, deprivation and crime.
Conclusions
Living in an area segregated by a ‘peaceline’ is detrimental to mental health suggesting segregated areas characterised by a heightened sense of ‘other’ pose a greater risk to mental health. The difference in results based on segregation measure highlights the importance of choice of measure when studying segregation.

Tackling antibiotic resistance: a dose of common antisense?

Resistance to antimicrobial agents undermines our ability to treat bacterial infections. It attracts intense media and political interest and impacts on personal health and costs to health infrastructures. Bacteria have developed resistance to all licensed antibacterial agents, and their ability to become resistant to unlicensed agents is often demonstrated during the development process. Conventional approaches to antimicrobial development, involving modification of existing agents or production of synthetic derivatives, are unlikely to deliver the range or type of drugs that will be needed to meet all future requirements. Although many companies are seeking novel targets, further radical approaches to both antimicrobial design and the reversal of resistance are now urgently required. In this article, we discuss ‘antisense’ (or ‘antigene’) strategies to inhibit resistance mechanisms at the genetic level. These offer an innovative approach to a global problem and could be used to restore the efficacy of clinically proven agents. Moreover, this strategy has the potential to overcome critical resistances, not only in the so-called ‘superbugs’ (methicillin-resistant Staphylococcus aureus, glycopeptide-resistant enterococci and multidrug-resistant strains of Acinetobacter baumannii, and Pseudomonas aeruginosa), but in resistant strains of any bacterial species.

A comparison of self-report and health care provider data to assess surveillance definitions of influenza-like illness in outpatients

Objective: Several surveillance definitions of influenza-like illness (ILI) have been proposed, based on the presence of symptoms. Symptom data can be obtained from patients, medical records, or both. Past research has found that agreements between health record data and self-report are variable depending on the specific symptom. Therefore, we aimed to explore the implications of using data on influenza symptoms extracted from medical records, similar data collected prospectively from outpatients, and the combined data from both sources as predictors of laboratory-confirmed influenza. Methods: Using data from the Hutterite Influenza Prevention Study, we calculated: 1) the sensitivity, specificity and predictive values of individual symptoms within surveillance definitions; 2) how frequently surveillance definitions correlated to laboratory-confirmed influenza; and 3) the predictive value of surveillance definitions. Results: Of the 176 participants with reports from participants and medical records, 142 (81%) were tested for influenza and 37 (26%) were PCR positive for influenza. Fever (alone) and fever combined with cough and/or sore throat were highly correlated with being PCR positive for influenza for all data sources. ILI surveillance definitions, based on symptom data from medical records only or from both medical records and self-report, were better predictors of laboratory-confirmed influenza with higher odds ratios and positive predictive values. Discussion: The choice of data source to determine ILI will depend on the patient population, outcome of interest, availability of data source, and use for clinical decision making, research, or surveillance. © Canadian Public Health Association, 2012.

Who's minding the shop?:the role of Canadian research ethics boards in the creation and uses of registries and biobanks

Abstract. Background. The amount of research utilizing health information has increased dramatically over the last ten years. Many institutions have extensive biobank holdings collected over a number of years for clinical and teaching purposes, but are uncertain as to the proper circumstances in which to permit research uses of these samples. Research Ethics Boards (REBs) in Canada and elsewhere in the world are grappling with these issues, but lack clear guidance regarding their role in the creation of and access to registries and biobanks. Methods. Chairs of 34 REBS and/or REB Administrators affiliated with Faculties of Medicine in Canadian universities were interviewed. Interviews consisted of structured questions dealing with diabetes-related scenarios, with open-ended responses and probing for rationales. The two scenarios involved the development of a diabetes registry using clinical encounter data across several physicians' practices, and the addition of biological samples to the registry to create a biobank. Results. There was a wide range of responses given for the questions raised in the scenarios, indicating a lack of clarity about the role of REBs in registries and biobanks. With respect to the creation of a registry, a minority of sites felt that consent was not required for the information to be entered into the registry. Whether patient consent was required for information to be entered into the registry and the duration for which the consent would be operative differed across sites. With respect to the creation of a biobank linked to the registry, a majority of sites viewed biobank information as qualitatively different from other types of personal health information. All respondents agreed that patient consent was needed for blood samples to be placed in the biobank but the duration of consent again varied. Conclusion. Participants were more attuned to issues surrounding biobanks as compared to registries and demonstrated a higher level of concern regarding biobanks. As registries and biobanks expand, there is a need for critical analysis of suitable roles for REBs and subsequent guidance on these topics. The authors conclude by recommending REB participation in the creation of registries and biobanks and the eventual drafting of comprehensive legislation.

Public knowledge and perceptions of connected health

Rationale, aims and objectives: This study aims to examine the public's knowledge and perceptions of connected health (CH).

Methods: A structured questionnaire was administered by face-to-face interview to an opportunistic sample of 1003 members of the public in 11 shopping centres across Northern Ireland (NI). Topics included public knowledge of CH, opinions about who should provide CH and views about the use of computers in health care. Multivariable analyses were conducted to assess respondents' willingness to use CH in the future.

Results: Sixty-seven per cent of respondents were female, 31% were less than 30 years old and 22% were over 60 years. Most respondents had never heard of CH (92%). Following a standard definition, the majority felt CH was a good idea (≈90%) and that general practitioners were in the best position to provide CH; however, respondents were equivocal about reductions in health care professionals' workload and had some concerns about the ease of device use. Factors positively influencing willingness to use CH in the future included knowledge of someone who has a chronic disease, residence in NI since birth and less concern about the use of information technology (IT) in health care. Those over 60 years old or who felt threatened by the use of IT to store personal health information were less willing to use CH in the future.

Conclusion: Increased public awareness and education about CH is required to alleviate concerns and increase the acceptability of this type of care.

Access to medical records for research purposes:Varying perceptions across research ethics boards

Introduction: Variation across research ethics boards (REBs) in conditions placed on access to medical records for research purposes raises concerns around negative impacts on research quality and on human subject protection, including privacy. Aim: To study variation in REB consent requirements for retrospective chart review and who may have access to the medical record for data abstraction. Methods: Thirty 90-min face-to-face interviews were conducted with REB chairs and administrators affiliated with faculties of medicine in Canadian universities, using structured questions around a case study with open-ended responses. Interviews were recorded, transcribed and coded manually. Results: Fourteen sites (47%) required individual patient consent for the study to proceed as proposed. Three (10%) indicated that their response would depend on how potentially identifying variables would be managed. Eleven sites (38%) did not require consent. Two (7%) suggested a notification and opt-out process. Most stated that consent would be required if identifiable information was being abstracted from the record. Among those not requiring consent, there was substantial variation in recognising that the abstracted information could potentially indirectly re-identify individuals. Concern over access to medical records by an outside individual was also associated with requirement for consent. Eighteen sites (60%) required full committee review. Sixteen (53%) allowed an external research assistant to abstract information from the health record. Conclusions: Large variation was found across sites in the requirement for consent for research involving access to medical records. REBs need training in best practices for protecting privacy and confidentiality in health research. A forum for REB chairs to confidentially share concerns and decisions about specific studies could also reduce variation in decisions.

Challenge of culture, conscience, and contract to general practitioners' care of their own health: qualitative study

Objective: To explore general practitioners' perceptions of the effects of their profession and training on their attitudes to illness in themselves and colleagues. Design: Qualitative study using focus groups and indepth interviews. Setting: Primary care in Northern Ireland. Participants: 27 general practitioners, including six recently appointed principals and six who also practised occupational medicine part time. Main outcome measures: Participants' views about their own and colleagues' health. Results: Participants were concerned about the current level of illness within the profession. They described their need to portray a healthy image to both patients and colleagues. This hindered acknowledgement of personal illness and engaging in health screening. Embarrassment in adopting the role of a patient and concerns about confidentiality also influenced their reactions to personal illness. Doctors' attitudes can impede their access to appropriate health care for themselves, their families, and their colleagues. A sense of conscience towards patients and colleagues and the working arrangements of the practice were cited as reasons for working through illness and expecting colleagues to do likewise. Conclusions: General practitioners perceive that their professional position and training adversely influence their attitudes to illness in themselves and their colleagues. Organisational changes within general practice, including revalidation, must take account of barriers experienced by general practitioners in accessing health care. Medical education and culture should strive to promote appropriate self care among doctors.

Translating evidence into practice: A shared priority in public health?

Translational and transdisciplinary research is needed to tackle complex public health problems. This article has three aims. Firstly, to determine how academics and non-academics (practitioners, policy makers and community workers) identified with the goals of the UKCRC Centre of Excellence for Public Health in Northern Ireland and how their attitudes varied in terms of knowledge brokerage and translation. Secondly, to map and analyse the network structure of the public health sector and the placement of the Centre within this. Thirdly, to aggregate responses from members of the network by work setting to construct the trans-sectoral network and devise the Root Mean Sum of Squares to determine the quality and potential value of connections across this network.The analysis was based on data collected from 98 individuals who attended the launch of the Centre in June 2008. Analysis of participant expectations and personal goals suggests that the academic members of the network were more likely to expect the work of the Centre to produce new knowledge than non-academics, but less likely to expect the Centre to generate health interventions and influence health policy. Academics were also less strongly oriented than non-academics to knowledge transfer as a personal goal, though more confident that research findings would be diffused beyond the immediate network. A central core of five nodes is crucial to the overall configuration of the regional public health network in Northern Ireland, with the Centre being well placed to exert influence within this. Though the overall network structure is fairly robust, the connections between some component parts of the network - such as academics and the third sector - are unidirectional.Identifying these differences and core network structure is key to translational and transdisciplinary research. Though exemplified in a regional study, these techniques are generalisable and applicable to many networks of interest: public health, interdisciplinary research or organisational involvement and stakeholder linkage.

Understanding the collaborative experience between researchers and health care practitioners:Implications for gerontological nursing practice

The health care field is a new arena for collaborative research carried out by practitioner-researcher teams. Although the current literature discusses factors supportive of such teams, most evidence is anecdotal or descriptive of pilot projects. In this article, the authors use survey and interview data to document health care practitioners' views on collaborative research with an experienced researcher/ mentor. Topics covered include a description of the research project and process, positive and negative aspects of doing research, expectations, recommendations to colleagues starting research, and desirable characteristics in practitioners and researchers on collaborative research teams. Of all attributes mentioned, personal traits and skills were among the most frequently mentioned for both practitioners and researchers, followed by research knowledge and attitudes for practitioners, and teaching skills for researchers. The article also addresses factors important to the success of collaborative research: how to develop a project, characteristics of collaborative team members, team functioning, and institutional support. Copyright © 2000 Taylor & Francis.