European Union Biomedical Research Law and Policy and Citizen Science

In this chapter I focus on the EU's emerging biomedical research law and policy and examine the development of citizen science in this setting. The chapter argues that while what the analysis reveals might not be specific to the EU, attention to this organisation underlines important but often overlooked aspects of citizen science. That is, citizen science is (being) made less about promoting substantive involvement by citizens in the fashioning of biomedical trajectories and their empowerment as participants that pursue aims defined by themselves rather than others. Instead citizen science is underpinned by a more longstanding EU level approach to participation in science-based issues that sees it being harnessed, shaped and directed towards supporting the production and legitimation of organisational identity and sociotechnical order (in this case the EU’s). Within biomedical research law and policy citizen science might therefore be expected to support market-optimised biomedical futures and a dynamic internal market and economy. Citizen science is thereby implicated in the delineation of the boundaries of responsibility and accountability (and blame) for the (non-)realisation of public health priorities and objectives. In this way law and policy on participation and citizen science might support current research trajectories that do not serve all health needs.

The Family Model - A transgenerational approach to mental health in families: personal, clinical, educational, research, systems and policy perspectives

The Family Model – A transgenerational approach to mental health in families This workshop will provide an overview on The Family Model (TFM) and its use in promoting and facilitating a trans­generational family focus in Mental Health services, over the past 10­ - 15 years. Each of the speakers will address a different perspective, including service user/consumer, clinical practice, education & training, research and policy. Adrian Falkov (chair) will provide an overview of TFM to set the scene and a ‘policy to practice’ perspective, based on use of TFM in Australia. Author: Heide Lloyd. The Family Model ­ A personal (consumer/patient) perspective | United Kingdom Heide will provide a description of her experiences as a child, adult, parent & grandparent, using TFM as the structure around which to ‘weave’ her story and demonstrate how TFM has assisted her in understanding the impact of symptoms on her & family and how she has used it in her management of symptoms and recovery (personal perspective). The Family Model ­ Education & training perspective ­ Marie Diggins | United Kingdom PhD Bente Weimand | Norway Authors: ­ Marie Diggins | United Kingdom PhD Bente Weimand | Norway This combined (UK & Norwegian) presentation will cover historical background to TFM and its use in eLearning (the Social Care Institute for Excellence)and a number of other UK initiatives, together with a description of the postgraduate masters course at the University Oslo/Akershus, using TFM. The Family Model ­ A research perspective PhD Anne Grant | Northern Ireland Author: PhD Anne Grant | Ireland Anne Grant will describe how she used TFM as the theoretical framework for her PhD looking at family focused (nursing) practice in Ireland. The Family Model ­ A service systems perspective ­ Mary Donaghy | Northern Ireland Authors: PhD Adrian Falkov | Australia ­ Mary Donaghy | N Ireland Mary Donaghy will discuss how TFM has been used to support & facilitate a cross service ‘whole of system’ change program in Belfast (NI) to achieve improved family focused practice. She will demonstrate its utility in achieving a broader approach to service design, delivery and evaluation.

Accessing Social Work Case Files for Research Purposes: Some Issues and Problems

The use of social work case files as an important research resource is being threatened by the increasing regulation of both the research process and access to personal identifiable information. While these developments can be seen as a reaction to specific incidents of inappropriate research and the misuse of personal information, it is argued that the pendulum has swung too far the other way, and in seeking to protect the rights of vulnerable individuals, the lives of these same individuals may go unstudied with the consequence that they receive less appropriate services. Drawing upon the current research of the authors, this article explores the difficulties encountered in gaining access to social work case files for research purposes without the explicit consent of service users and highlights the uncertainty surrounding this issue. Suggestions are made for improvements in the situation.

Creative Activism: a pedagogical and research tool

Environmental activism has a long history in protest, addressing issues of degradation and segregation that threaten existing ecologies, social and built fabrics. Environmental activism is traditionally understood as a reaction, chiefly by groups of people, against a perceived external threat. In the 60’s and 70’s, an activist stance began to emerge in the work of some artists and architects, who used creative methods such as performances, happenings, temporary spatial interventions etc to convey their political/aesthetic messages. Some of this work engaged directly with communities but predominantly it was the production of one individual working ‘outside’ society. However such actions demonstrated not only the power of the visual in conveying a political message but also the potential of conceptual creative approaches to reveal alternative values and hidden potentials. This marked a shift from activism as protestation towards an activism of reconceptualisation. Recently, activist groups have developed a more politically informed process. Whilst their ‘tools’ may resemble work from the 60’s and 70’s , their methodologies are non-traditional, ’rhizomatic’, pedagogical and fluid; working alongside, rather than against, the established power and funding structures. Such creative processes build new, often unexpected, stakeholder networks; offer neutral spaces in which contentious issues can be faced; and create better understanding of values and identities. They can also lead to permanent improvements and development in the physical fabric. This paper will discuss a pedagogical example of activism in architectural education. The event (www.fourdaysontheoutside.com) is in its fifth year of existence and as such has revealed a value and impulse beyond its learning and teaching value. The paper will discuss how the event contributes to the university’s outreach programme and how its structure acts as a seedbed for potential research projects and partnerships. UK Universities talk extensively about applied research but have few actual strategies by which to generate it. Fourdaysontheoutside offers some potential ways forward.

The Philosophy and Practice of Interpretivist Research in Entrepreneurship Quality, Validation, and Trust

Knowledge production in entrepreneurship requires inclusivity as well as diversity and pluralism in research perspectives and approaches. In this article, the authors address concerns about interpretivist research regarding validity, reliability, objectivity, generalizability, and communicability of results that militate against its more widespread acceptance. Following the nonfoundationalist argument that all observation is theory-laden, context specific, and that there are no external criteria against which to assess research design and execution and the data produced, the authors propose that quality must be internalized within the underlying research philosophy rather than something to be tested upon completion. This requires a shift from the notion of validity as an outcome to validation as a process. To elucidate this, they provide a guiding framework and present a case illustration that will assist an interpretivist entrepreneurship researcher to establish and demonstrate the quality of their work.

Action research and reflective practice: towards a holistic view

Two concepts that have captured the imagination of the educational community in the last 60 years have been those of ‘reflective practice’ and ‘action research’. Both, in their various forms, are considered to be critical dimensions of the professional development of teachers. However, whilst both were receiving academic attention during the 1930s and 1940s (Lewin, 1934, cited in Adelman, 1993; Lewin, 1946; Dewey, 1933), it was not until Stenhouse’s (1975) notion of the teacher-as-researcher that the two came most compellingly into relationship and educational action research as a process, which held at its centre different kinds of reflection, began to be reformulated in Britain (Carr, 1993). This article considers the important part played in teachers’ development by different kinds of action research. Its central thesis is that, although action research has a critical role to play not least as a means of building the capacity of teachers as researchers of their own practice, there has been insufficient attention given to both the nature of reflection in the action research process, and its relationship to the purposes, processes and outcomes. The article challenges the rational, cognitive models of reflection that are implicit in much of the action research literature. It suggests that more attention needs to be given to the importance of the role of emotion in understanding and developing the capacities for reflection which facilitates personal, professional and ultimately system change.

‘Playing it by the rules': the politics of research in ‘race' and education

This article offers an examination of the interplay between politics, ethics, theory and methodology as they impact upon social research, through a critical analysis of the ethnographic study conducted by Peter Foster. It will be argued that his highly contentious claim to have found no manifestations of racism (either direct or indirect) throughout his study of an inner-city, multi-ethnic comprehensive school was, in the last analysis, both misleading and inaccurate. It will be contended that such claims were based upon a research design and methodology which were ultimately determined by his own political orientation and the ethical and theoretical positions which he developed as a consequence.

Research ethics committees: values and power in higher education

The rise of research governance structures in universities has created huge disquiet amongst academic researchers. The unquestioning adoption of a medical model of ethical review based upon positivist methodological assumptions has created for many a mismatch between their own ongoing ethical research practice and the process of obtaining clearance from Research Ethics Committees (REC). This paper examines the issues that have contributed to dissatisfaction with the ethical review model that is prevalent within the modern university. Using examples from the authors’ own experiences, the dynamics of values, interests and power in research governance is examined from multiple perspectives including that of REC member and applicant; lecturer/student supervisor; researcher; and
university administrator. The paper reveals a rift between the values and objectives of the key players in research governance within the modern university and concludes by asking whether differences can be resolved so that a collaborative approach to ethical review may be incorporated into a renewed academic research culture. It is suggested that the alternative is increasing alienation from anything to do with ‘ethics’, with potentially serious consequences for the ethical standards of social research.

Cystic fibrosis research in allied health and nursing professions

This report is the result of the "Allied Health and Nursing Professions Working Group" meeting which took place in Verona, Italy, November 2009, which was organised by the European Cystic Fibrosis Society, and involved 32 experts. The meeting was designed to provide a "roadmap" of high priority research questions that can be addressed by Allied Health Professionals (AHP) and nursing. The other goal was to identify research skills that would be beneficial to AHP and nursing researchers and would ultimately improve the research capacity and capability of these professions. The following tasks were accomplished: 1) a Delphi survey was used to identify high priority research areas and themes, 2) common research designs used in AHP and nursing research were evaluated in terms of their strengths and weaknesses, 3) methods for assessing the clinimetric and psychometric properties, as well as feasibility, of relevant outcome measures were reviewed, and 4) a common skill set for AHPs and nurses undertaking clinical research was agreed on and will guide the planning of future research opportunities. This report has identified important areas and themes for future research which include: adherence; physical activity/exercise; nutritional interventions; interventions for the newborn with CF and evaluation of outcome measures for use in AHP and nursing research. It has highlighted the significant challenges AHPs and nurses experience in conducting clinical research, and proposes strategies to overcome these challenges. It is hoped that this report will encourage research initiatives that assess the efficacy/effectiveness of AHP and nursing interventions in order to improve the evidence base. This should increase the quality of research conducted by these professions, justify services they currently provide, and expand their skills in new areas, with the ultimate goal of improving care for patients with CF.

Learner-Teacher Interaction (LTI): engaging and supporting students in achieving self-regulated learning

This report represents the second stage of a study which was part of a wide-ranging research programme conducted by the Centre for Excellence of Interprofessional Education, Queen’s University Belfast. The study was an investigation into learner-teacher interaction in the education of undergraduate medical and other healthcare students in order to inform how teachers might facilitate learning in a healthcare setting. It focused in particular on clinical and ward-based tutorials and seminars.

In order to give meaning to this second stage of the study, the report will contextualise the learner-teacher interaction study, will describe the research methods and methods of analysis developed and used to explore learner-teacher interaction. It will then focus on this second stage of the research and the results of the analysis of video sessions of clinical and ward-based tutorials and seminars. In particular it will identify examples of good practice and missed opportunities for the engagement of the learners.