Ethical issues in neuroimaging health research:an IPA study with research participants

Neuroimaging is increasingly used to understand conditions like stroke and epilepsy. However, there is growing recognition that neuroimaging can raise ethical issues. We used interpretative phenomenological analysis to analyse interview data pre-and post-scan to explore these ethical issues. Findings show participants can become anxious prior to scanning and the protocol for managing incidental findings is unclear. Participants lacked a frame of reference to contextualize their expectations and often drew on medical narratives. Recommendations to reduce anxiety include dialogue between researcher and participant to clarify understanding during consent and the use of a `virtual tour' of the neuroimaging experience.

Using the framework method for the analysis of qualitative data in multi-disciplinary health research

Background: The Framework Method is becoming an increasingly popular approach to the management and analysis of qualitative data in health research. However, there is confusion about its potential application and limitations. Discussion. The article discusses when it is appropriate to adopt the Framework Method and explains the procedure for using it in multi-disciplinary health research teams, or those that involve clinicians, patients and lay people. The stages of the method are illustrated using examples from a published study. Summary. Used effectively, with the leadership of an experienced qualitative researcher, the Framework Method is a systematic and flexible approach to analysing qualitative data and is appropriate for use in research teams even where not all members have previous experience of conducting qualitative research. © 2013 Gale et al.; licensee BioMed Central Ltd.

The new UK research governance: its impact on pharmacy undergraduate research projects

Implementation of the Department of Health Research Governance Framework (RGF) in the United Kingdom has major implications for the conduct of pharmacy practice undergraduate research projects. This paper draws upon a survey of local ethics research committees (LRECs) in the greater Birmingham area to identify the issues that arise from the RGF in relation to non-clinical practice research in community pharmacy. Although there is some evidence of minor differences between LRECs, the overwhelming finding is that projects will be subject to the full force of the RGF. The implications are discussed in relation to specific issues relating to non-clinical research, the professional aspirations for a research capable workforce, and the expertise within pharmacy to meet the current accreditation requirements for undergraduate projects.

Community pharmacists' engagement with public health in Great Britain

Objective - The objective of the research was to examine to what extent community pharmacists in Great Britain believed that their job was concerned with local public health issues. Methods - The project (Pharmacy and Public Health)received ethical approval from the Research Ethics Committee of the School of Life and Health Sciences at Aston University. After piloting, in August 2006 a self-completion postal questionnaire was sent to practicing community pharmacists in Great Britain (n=1998), with a follow-up to non-responders 4 weeks later. A final response rate of 51% (n=1023/1998) was achieved. Results - Respondents were asked to indicate their answer to the question “to what extent is your present job concerned with local public health issues?” on a three-point scale – “highly”, “slightly” or “not at all” concerned with public health. They were also asked to indicate whether they were pharmacy owners, employee pharmacists or self-employed locum pharmacists. Less than half (43%,n=384/898) of respondents answering both questions believed that their job was highly concerned with public health. A relationship was observed between employment status and the level to which a respondent believed that their job was concerned with public health (chi-square test with P=0.001). Over half of pharmacy owners (51%, n=68/134) considered that their job was highly concerned with public health compared to44% (n=193/443) of employee pharmacists and38% (n=123/321) of locum pharmacists. Conclusion - This research suggests that community pharmacists in Great Britain are not ‘fully engaged’ with public health. Pharmacy owners may feel more enfranchised in the public health movement than their employees and locums. Indeed, one-in-ten locums reported that their job was not at all concerned with public health which, as locum pharmacists constitute over a third of actively employed community pharmacists, could be limiting factor in any drive to strengthen the public health function of community pharmacists.

Exchanging knowledge on participation by EU health consumers and patients in research, quality and policy

Sponsored by ZonMw (The Netherlands Organisation for Health Research and Development) The Hague 11–12 April 2013

What purpose does the MPharm research project serve?

In 2004, the Royal Pharmaceutical Society of Great Britain (RPSGB) funded research on teaching, learning and assessment within the UK undergraduate pharmacy degree (MPharm), including the compulsory final year project. Documentary analysis showed that all schools met the project requirement, although there were wide variations in the relative contribution of the project to the final year mark and the degree classification. Interviews with staff revealed that organisation of research projects was complex and time consuming and exacerbated by increasing student numbers and the impact of research ethics. 61% of students, surveyed via a self-completion questionnaire (response rate 50.6%) perceived the research project to be very or fairly important. Whilst 47% considered that they had enough choice of topic and 37% said that their training in research methods provided a good foundation for their project, this suggests scope for improvement. In the UK, there are legislative changes impending which may provide an opportunity to review the future purpose and feasibility of a "significant" final year project within the MPharm.

"It's no skin off my nose":Why people take part in qualitative research

In this article, the authors analyze participants' accounts of why they took part in a repeat-interview study exploring newly diagnosed patients' perceptions of diabetes service provision in Lothian, Scotland. The study involved three semistructured in-depth interviews with each patient (N = 40), which spanned a year. The authors provide a thematic discursive analysis of responses to the question, Can I ask you what made you decide to part in the study and why you've stayed involved over the past year? The main themes are (a) recruitment within health contexts ("the nurse said it would help"), (b) altruism ("if it can help somebody"), (c) qualitative research being seen as inherently innocuous ("nothing to lose"), and (d) therapeutic aspects of interviewing ("getting it off my chest"). The analysis contributes both to the qualitative literature about generic research participation and to a germinal literature exploring qualitative health research participation. © 2006 Sage Publications.

Negotiating access and establishing expertise

This book is concerned with the day-to-day realities of doing social science research. It is based upon the reflections and experiences of a wide range of established social researchers, the majority of whom undertake research in the field of health care. By drawing upon their anecdotal accounts of setting up research projects, negotiating access, collecting and analysing data, and disseminating findings, the book highlights a multitude of practical and ethical complexities involved in the conduct of empirically based research. It delineates the emotional, social and cultural factors involved at all stages of the research process, and sets this delineation in the context of wider debates about the relationship between research methods and research ethics.

An exploration of pharmacy-specific reasons for non-adherence to prescribed medicines in a socioeconomically deprived, ethnically diverse UK cohort

Methods - Ethical approval for the study was granted by both the local National Health Service (NHS) Research Ethics Committee (REC) and Aston University’s REC. Seven focus groups were conducted between October and December 2011 in medical or community settings within inner-city Birmingham (UK). Discussions were guided by a theme plan which was developed from key themes identified by a literature review and piloted via a Patient Consultation Group. Each focus group had between 3 and 7 participants. The groups were digitally recorded and subsequently transcribed verbatim. The transcriptions were then subjected to thematic analysis via constant comparison in order to identify emerging themes. Results - Participants recognised the pharmacist as an expert source of advice about prescribed medicines, a source they frequently felt a need to consult as a result of the inadequate supply of medicines information from the prescriber. However, an emerging theme was a perception that pharmacists had an oblique profit motive relating to the supply of generic medicines with frequent changes to the ‘brand’ of generic supplied being attributed to profit-seeking by pharmacists. Such changes had a negative impact on the patient’s perceived efficacy of the therapy which may make non-adherence more likely. Conclusions - Whilst pharmacists were recognised as medicines experts, trust in the pharmacist was undermined by frequent changes to generic medicines. Such changes have the potential to adversely impact adherence levels. Further, quantitative research is recommended to examine if such views are generalisable to the wider population of Birmingham and to establish if such views impact on adherence levels.

Medicines optimisation for young people with juvenile arthritis and other long-term conditions:system-level barriers to engagement

To explore the views of pharmacy and rheumatology stakeholders about system-related barriers to medicines optimisation activities with young people with long-term conditions. A three-phase consensus-building study comprising (1) focus groups with community and hospital pharmacists; (2) semi-structured telephone interviews with lay and professional adolescent rheumatology stakeholders and pharmacy policymakers, and (3) multidisciplinary discussion groups with community and hospital pharmacists and rheumatology staff. Qualitative verbatim transcripts from phases 1 and 2 were subjected to framework analysis. Themes from phase 1 underpinned a briefing for phase 2 interviewees. Themes from phases 1 and 2 generated elements of good pharmacy practice and current/future pharmacy roles for ranking in phase 3. Results from phase 3 prioritisation and ranking exercises were captured on self-completion data collection forms, entered into an Excel spreadsheet and subjected to descriptive statistical analysis. Institutional ethical approval was given by Aston University Health and Life Sciences Research Ethics Committee. Four focus groups were conducted with 18 pharmacists across England, Scotland and Wales (7 hospital, 10 community and 1 community/public health). Fifteen stakeholders took part in telephone interviews (3 pharmacist commissioners; 2 pharmacist policymakers; 2 pharmacy staff members (1 community and 1 hospital); 4 rheumatologists; 1 specialist nurse, and 3 lay juvenile arthritis advocates). Twenty-five participants took part in three discussion groups in adolescent rheumatology centres across England and Scotland (9 community pharmacists; 4 hospital pharmacists; 6 rheumatologists; 5 specialist nurses, and 1 physiotherapist). In all phases of the study, system-level issues were acknowledged as barriers to more engagement with young people and families. Community pharmacists in the focus groups reported that opportunities for engaging with young people were low if parents collected prescriptions alone, which was agreed by other stakeholders. Moreover, institutional/company prescription collection policies – an activity largely disallowed for a young person under 16 without an accompanying parent - were identified by hospital and community pharmacists as barriers to open discussion and engagement. Few community pharmacists reported using Medicines Use Review (England/Wales) or Chronic Medication Service (Scotland) as a medicines optimisation activity with young people; many were unsure about consent procedures. Despite these limitations, rheumatology stakeholders ranked highly the potential of pharmacists empowering young people with general health care skills, such as repeat prescription ordering. The pharmacy profession lacks vision for its role in the care of young people with long-term conditions. Pharmacists and rheumatology stakeholders identified system-level barriers to more engagement with young people who take medicines regularly. We acknowledge that the modest number of participants may have had a specific interest and thus bias for the topic, but this underscores their frank admission of the challenges. Professional guidance and policy, practice frameworks and institutional/company policies must promote flexibility for pharmacy staff to recognise and empower young people who are able to give consent and take responsibility for medicines activities. This will increase mutual confidence and trust, and foster pharmacy’s role in teaching general health care skills. In this way, pharmacists will be able to build long-term relationships with young people and families.

HIV, cardiovascular diseases, and chronic arsenic exposure co-exist in a positive synergy

Recent epidemiological evidences indicate that arsenic exposure increases risk of atherosclerosis, cardio vascular diseases (CVD) such as hypertension, atherosclerosis, coronary artery disease (CAD) and microangiopathies in addition to the serious global health concern related to its carcinogenic effects. In experiments on animals, acute and chronic exposure to arsenic directly correlates with cardiac tachyarrhythmia, and atherogenesis in a concentration and duration dependent manner. Moreover, the other effects of long-term arsenic exposure include induction of non-insulin dependent diabetes by mechanisms yet to be understood. On the other hand, there are controversial issues, gaps in knowledge, and future research priorities in accelerated incidences of CVD and mortalities in patients with HIV who are under long-termanti-retroviral therapy (ART). Although, both HIV infection itself and various components of ART initiate significant pathological alterations in the myocardium and the vasculature, simultaneous environmental exposure to arsenic which is more convincingly being recognized as a facilitator of HIV viral cycling in the infected immune cells, may contribute an additional layer of adversity in these patients. A high degree of suspicion and early screening may allow appropriate interventional guidelines to improve the quality of lives of those affected. In this mini-review which have been fortified with our own preliminary data, we will discuss some of the key current understating of chronic arsenic exposure, and its possible impact on the accelerated HIV/ART induced CVD. The review will conclude with notes on recent developments in mathematical modeling in this field that probabilistically forecast incidence prevalence as functions of aging and life style parameters, most of which vary with time themselves; this interdisciplinary approach provides a complementary kernel to conventional biology.