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This paper is the product of a workshop that brought together practitioners, researchers, and data experts to discuss how big data is becoming a resource for positive social change in low- and middle-income countries (LMICs). We include in our definition of big data sources such as social media data, mobile phone use records, digitally mediated transactions, online news media sources, and administrative records. We argue that there are four main areas where big data has potential for promoting positive social change: advocacy; analysis and prediction; facilitating information exchange; and promoting accountability and transparency. These areas all have particular challenges and possibilities, but there are also issues shared across them, such as open data and privacy concerns. Big data is shaping up to be one of the key battlefields of our time, and the paper argues that this is therefore an opportune moment for civil society groups in particular to become a larger part of the conversation about the use of big data, since questions about the asymmetries of power involved are especially urgent in these uses in LMICs. Civil society groups are also currently underrepresented in debates about privacy and the rights of technology users, which are dominated by corporations, governments and nongovernmental organizations in the Global North. We conclude by offering some lessons drawn from a number of case studies that represent the current state-of-the-art. [ABSTRACT FROM AUTHOR]

Biobanks are collections of human biological tissue specimens and related health data. Biobank research hopes to provide novel insights into the genetic component of disease, ultimately leading to a more personalized approach to healthcare. However, biobanks have sparked debate due to the ethical, legal, and social implications surrounding utilization of population samples and data. These controversies include issues of consent, privacy and confidentiality, return of results and data-sharing. This paper provides an overview of the different types and scope of biobanks and an examination of the most pertinent ethical, legal and social considerations surrounding such research, as well as how some of these concerns are being addressed. The paper finishes with a discussion of the relevance of biobanks to the genetic counseling field and concludes that genetic counselors are in a position to make a unique, educated and practical contribution to the ongoing dialogue and direction of biobank research. [ABSTRACT FROM AUTHOR]

This paper is about working with people with learning disabilities to develop a research (or 'finding out') study. We worked with people from Reach, a group-advocacy project, which is part of Assist in Staffordshire, to write clear and simple information sheets and consent forms to help people with learning disabilities and dementia to participate in a research study. We also worked with members of Reach to create appropriate, clear and simple interview questions to ask people with learning disabilities and dementia about their experiences. Working alongside people with learning disabilities helps to ensure the work is fit for purpose. There has been an increase in inclusive research in the learning disability field; however, this has not been reflected within learning disability and dementia research, where little is known from the perspective of people with learning disabilities. This paper will define inclusive research, explore reasons for the dearth of inclusive dementia research, and identify the challenges of conducting dementia research involving people with learning disabilities. Examples of working with people with learning disabilities to develop elements of a PhD research study will be detailed and critically discussed. These experiences aided the creation of accessible material about dementia for a PhD research study. Subsequently, this helped to overcome challenges of communication within the research study and helped to promote the participation of people with learning disabilities and dementia. Sharing these ideas about how we worked together will help others who are seeking to engage and achieve more inclusive research practices with marginalised populations. [ABSTRACT FROM AUTHOR]

Sociological research has examined straight parents in 'traditional' family arrangements who become gay rights activists, but pays insufficient attention to how this puzzling identity comes into being. Drawn from observations and interviews of parents participating in a local chapter of Parents and Friends of Lesbians and Gays (PFLAG) (2009 to 2010), this paper analyzes the parenting activities undertaken by straight parents of gay children as a moral career, involving stages of acceptance that can lead to eventual public advocacy. Paradoxically, these parents become radical normals through these stages; that is to say, they 'do' the work of parenting by becoming gay rights advocates, motivated by commitments to conventional imperatives of loving and supporting a child. Using the conceptual scaffolding of the moral career, this paper identifies the mechanisms that move parents through these different career stages. [ABSTRACT FROM AUTHOR]

This professional issues paper outlines the experience and value of engagement with disability advocates, philosophy scholars and bioethicists for spirited debate of issues such as modern eugenics, the expressivist objection and reproductive choice. This process for one group of individuals, undoubtedly prompted deeper examination and questioning of some long held personal and professional views, for all participants. For this author, engagement in the 'Disability Rights-Genetic Counseling Interest Group' over a full year resulted in several positive changes in genetic counselling practice as well as the development of meaningful, robust philosophical defence of the dual roles in genetic counseling; advocacy for those with disabilities, and facilitation of a full range of reproductive choices. [ABSTRACT FROM AUTHOR]

As a follow-up to a recent study which highlighted the existence of medical dominance in multi-disciplinary team (MDT) meetings, this paper presents research findings from an Australian study which shows that medico-centrism is a key cause of tension within MDTs. The findings are from a 1-year qualitative study in a regional hospital that explored the ethical decision-making of health professionals within an acute care medical unit. This exploration was conducted through an iterative, phenomenological, qualitative research methodology that consisted of open-ended interviews with a multi-disciplinary representation of health professionals and a sample of consumers for whom they care. The paper situates the notion of nursing advocacy within the context of medico-centrism and examines how the nursing profession interfaces with other disciplines. The findings indicate that the professional framework of nursing includes the language of advocacy, whilst the framework of doctors centres around the medical decision-making process. All professional groups made reference to the MDT as the modus operandi for patient-centred care. All participants noted that time and familiarity with patients and their families is essential for patient-centred care and this could be achieved through MDT collaboration. However, doctors who have scant time to spend with patients saw it as their responsibility to direct the decisions of the MDT and viewed the MDT as adding confusion to the decision-making process. Nurses reported that the limited amount of time spent by doctors in patient consultation translated into the need for advocacy. Professional and clinical confidence and experience are noted as necessary to successfully engage in the process of advocacy. The findings of this article indicate that the adoption of an advocacy role by nurses represents an important means through which MDT operation can be enhanced, medico-centrism limited and patient-centred care improved. [ABSTRACT FROM AUTHOR]

Vegetarianism is viewed by its advocates as ethical food consumption par excellence. Yet the steady, albeit modest, growth in vegetarians worldwide is paradoxically set against an increase in global meat consumption. This study draws on the literature of ethical consumption to illuminate the practical challenges in vegetarianism advocacy. Research on ethical food consumption focuses on three main lines of inquiry, namely how is ethical food defined; under what socio-spatial conditions do consumers choose to consume (or not consume) ethical food and what ends do consumers hope to achieve by consuming ethically. This article details the discursive framings of anti-meat advocacy and shows how such framings fall short of presenting vegetarianism as a form of ethical food consumption. The challenges in persuading consumers to stop meat consumption (as opposed to merely reducing consumption) are well known. In this paper, I highlight a less discussed challenge, relating to the lack of 'real' substitutes for meat, in anti-meat advocacy. Through a discussion of what I will call the problem of 'meaningful substitution', I address a comparatively under-explored question in ethical food consumption research: what is the relative (ethical) relationship between two products? Addressing this question sheds light on our very definition of ethical product and consumption, as well as the challenges of ethical consumption advocacy. Through a series of in-depth interviews with vegetarians (both advocates and non-advocates) in Taipei, Taiwan, I conclude that the various moral and nature-based framings of vegetarianism, as a form of ethical food consumption, are weakened by the lack of a meaningful substitute. More broadly, the study speaks to the practical politics and policies in the effective promotion of ethical consumption. [ABSTRACT FROM AUTHOR]

Title. The content of advocacy in procedural pain care - patient’ and nurses’ Perspectives. Aim. This paper is a report of an exploration of the content of nursing advocacy from the point of view of patients and nurses in the context of procedural pain care. Background. Nursing advocacy is every nurse’s professional duty, grounded in patients’ legal and moral rights. Nevertheless, earlier research has approached advocacy as a whistle-blowing event from the nurse’s perspective. Method. This cross-sectional study was conducted with a cluster sample of otolaryngology patients ( n = 405) and nurses ( n = 118) in 11 hospital units in Finland during 2007. The data were collected using an instrument measuring the content of advocacy and analysed statistically. Results. Advocacy in procedural pain care is a process which takes place in the patient–nurse relationship through role identification in decision-making about pain care. This prompts counselling and responding activities, which in turn lead to some degree of empowerment on the part of both patient and nurse. However, advocacy is partly dependent on the nurse’s own role identification: in the context of pain care it seems that the nurse’s pain care skills and influence over pain care plans are important factors in the decision to advocate or not. At best, patients have some role in decision-making about their care; at worst, they are subjected to paternalism. Conclusions. Advocacy is an integral part of the nursing care process. It is important that this key ethical aspect of professional nursing is discussed in nursing education and systematically applied in nursing practice through on-the-job training, feedback and collaboration. [ABSTRACT FROM AUTHOR]

This paper looks at some preliminary findings from research with young people in foster and residential care in the UK who have received advocacy services from a range of local authority and voluntary agencies. The study also includes the views of professionals, from both children's rights and social services. The initial findings highlight the importance to young people of their relationship with rights professionals. They speak about the value to them of care and respect, aspects not always seen as fundamental to rights work. Caring, in its various guises is seen by young people as a vital component of their relationship with children's rights workers. They also see this as important within advocacy work itself since caring about the outcome is often key. A pure individual rights focus with an emphasis on challenge and ‘being heard’ may not take account of the complexity of their situation and may pose difficult dilemmas for young people, especially in dealings with their carers. This ‘caring’ advocacy is not the paternalistic approach of a professional who ‘knows what's best for you’ but is a model based on a strong awareness of ways that young people are excluded and oppressed. It is also about placing a positive value on their contribution as citizens and links to a view of society that gives importance to an ethic of inter-relationship and care as well as an ethic of individual rights. Copyright © 2007 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Title. The nature of advocacy vs. paternalism in nursing: clarifying the ‘thin line’. Aim. This paper is an exploration of the concepts of advocacy and paternalism in nursing and discusses the thin line between the two. Background. Nurses are involved in care more than any other healthcare professionals and they play a central role in advocating for patients and families. It is difficult to obtain a clear definition of advocacy, yet the concepts of advocacy and paternalism must be compared, contrasted, and discussed extensively. In many situations, only a thin line distinguishes advocacy from paternalism. Data sources. A literature search was conducted using PubMed and CINAHL databases (2000–2008) as well as a library catalogue for texts. Discussion. Four case stories were described in order to discuss the ‘thin line’ between advocacy and paternalism and develop communication strategies to eliminate ambiguity. Weighing the ethical principles of beneficence and autonomy helps to clarify advocacy and paternalism and provides an avenue for discussion among nurses practicing in a variety of settings. Implications for nursing. Advocacy and paternalism should be discussed at interdisciplinary rounds, and taken into consideration when making patient care decisions. It is difficult to clarify advocacy vs. paternalism, but strategies such as knowing the patient, clarifying information, and educating all involved are initial steps in distinguishing advocacy from paternalism. Conclusion. Truly ‘knowing’ patients, their life experiences, values, beliefs and wishes can help clarify the ‘thin line’ and gain a grasp of these difficult to distinguish theoretical concepts. [ABSTRACT FROM AUTHOR]

The work of a bioethicist carries distinctive responsibilities. Alongside those of any worker, there are responsibilities associated with giving guidance to practitioners, policy makers and the public. In addition, bioethicists are professionally exposed to and required to identify situations of moral trouble, and as a result may find themselves choosing to work as advocates or activists, with responsibilities that are distinct from those generally acknowledged within academia. The requirement for bioethics to make normative judgements entails taking a stance, which means there cannot be a sharp line between 'academic' or 'objective' bioethics, and advocacy/activism, but a continuum of bioethicists' engagement and an associated continuum of responsibilities. [ABSTRACT FROM AUTHOR]

Background and objective: Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. Setting and sample: The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals. Method: This study had a descriptive design using qualitative methods: 18 in‐depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein's involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. Findings and conclusion: The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short‐term solutions to practical problems, while professionals perceived great benefits in long‐term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long‐term support, to build a solid basis for pursuing meaningful involvement in the entire decision‐making process. [ABSTRACT FROM AUTHOR]

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Background: Recommendations from national bodies regarding extremely preterm infants have focussed almost exclusively on thresholds for intervention based upon estimated gestational age (GA) alone. Methods: We reviewed policy statements that address active intervention for newborn infants and compare them with those that are available for older patients. We reviewed research, examining attitudes towards preterm infants, uncertainties in GA assessment and other factors important in determining prognosis at the time of birth. Results: Policy statements regarding active care of very preterm infants treat this population differently from others in morally significant ways – without rationalizing this discrepancy. Extremely preterm infants are devalued in medical and lay opinion compared to older individuals with similar outcomes. Uncertainty in GA estimates often covers a range with vastly differing prognoses. Sex, birth weight, inborn-outborn status and use of antenatal steroids are vitally important in prognosis, but clinical findings in the delivery room are not. Most policy statements fail to account for these factors. Conclusion: Simplistic policies based on GA alone should be avoided. Decision making for extremely preterm infants should recognize that they are each unique and must be individualized, taking into account all relevant prognostic factors and the values and wishes of the families. [ABSTRACT FROM AUTHOR]