Ethical analysis to improve decision-making on health technologies

Health technology assessment (HTA) is the multidisciplinary study of the implications of the development, diffusion and use of health technologies. It supports health-policy decisions by providing a joint knowledge base for decision-makers. To increase its policy relevance, HTA tries to extend beyond effectiveness and costs to also considering the social, organizational and ethical implications of technologies. However, a commonly accepted method for analysing the ethical aspects of health technologies is lacking. This paper describes a model for ethical analysis of health technology that is easy and flexible to use in different organizational settings and cultures. The model is part of the EUnetHTA project, which focuses on the transferability of HTAs between countries. The EUnetHTA ethics model is based on the insight that the whole HTA process is value laden. It is not sufficient to only analyse the ethical consequences of a technology, but also the ethical issues of the whole HTA process must be considered. Selection of assessment topics, methods and outcomes is essentially a value-laden decision. Health technologies may challenge moral or cultural values and beliefs, and their implementation may also have significant impact on people other than the patient. These are essential considerations for health policy. The ethics model is structured around key ethical questions rather than philosophical theories, to be applicable to different cultures and usable by non-philosophers. Integrating ethical considerations into HTA can improve the relevance of technology assessments for health care and health policy in both developed and developing countries.     

Photovoice: a participatory action research strategy applied to women's health

Photovoice is a participatory action research strategy that may offer unique contributions to women's health. It is a process by which people can identify, represent, and enhance their community through a specific photographic technique. Photovoice has three main goals: to enable people (1) to record and reflect their community's strengths and concerns, (2) to promote critical dialogue and knowledge about personal and community issues through large and small group discussion of their photographs, and (3) to reach policymakers. This report gives an overview of the origins, key concepts, methods, and uses of photovoice as a strategy to enhance women's health.     

Becoming an information master: using "medical poetry" to remove the inequities in health care delivery

In response to the spiraling costs, the US populace, for now, has chosen to ration health care by choosing who can receive it rather than what services are provided. Changing this approach will require an organized national policy and will be difficult. Clinicians must accept that providing minimally beneficial but not absolutely necessary care to their patients increases cost without significantly improving quality, and results in more people who lack adequate health care. The public must accept that exclusively focusing health care decisions on individuals places patients in conflict with their community, their family, and, eventually, themselves. Effectively using valid Patient-Oriented Evidence that Matters (POEMs) will give family physicians the tools necessary to improve the value of health care services. Family physicians are in the unique position to guide the necessary changes in health care delivery to resolve these conflicts and to be leaders in this process.     

A review of conflict of interest, competing interest, and bias for toxicologists

One of the issues often associated with scientific misconduct is conflict of interest. Although there is a lack of uniformity in the definition of conflict of interest, many express concerns that competing interests may bias research methods and the interpretation of data and conclusions. In extreme cases, conflict of interest activity could contribute to scientific misconduct, hinder the training of scientists, delay the dissemination of research results, lead to the harming of human health and the environment, and misdirect society's decisions that rely on science. This article is not a commentary or editorial but an attempt to supply an overview of what has been said, researched, and accomplished in the area of conflict of interest for toxicologists. Discussion of the financial, professional, and philosophical concerns associated with conflict of interest will be followed by brief discussion of general management approaches and the roles of scientists and organizations from all sectors (i.e., academia, industry, non-profit organizations, and government).     

Intimate partner violence among Afghan women living in refugee camps in Pakistan

The purpose of this paper is to explore events and factors that lead to conflict in the home in the Afghan refugee setting, and the current status of the health sector's ability to respond to evidence of conflict. Qualitative interviews were conducted with 20 women of reproductive age and 20 health workers serving these women in an Afghan refugee camp near Peshawar, Pakistan, during the summer of 2004. In particular, this paper analyses women's explanations of how various marriage traditions may be linked to conflict in the home and how the interactions of different family members may be related to conflict. The relationships of women with their parents-in-law and husbands are highlighted in particular, and a model developed to explore the choreography of their relationships and the ways in which these dynamics may encourage or inhibit violence. The perspectives of health workers on the ways in which the health system responds to family conflict and violence are also presented. Finally, this paper provides information that helps to frame the issues of family violence and conflict in long-term refugee populations for intervention designers and those who are working to craft a health sector response to this problem.     

Health impact assessment, human rights and global public policy: a critical appraisal

Public policy decisions in both the social and economic spheres have enormous impact on global public health. As a result of this, and of the skewed global distribution of power and resources, health impact assessment (HIA) potentially has a key role to play in foreign policy-making and global public policy-making. Governments, multilateral bodies and transnational corporations need to be held to account for the health impacts of their policies and practices. One route towards achieving this objective involves the inclusion of human rights assessments within HIA. International commitments to human rights instruments and standards can be used as a global auditing tool. Methodological issues may limit the effectiveness of HIA in promoting health equity. These issues include the use of procedures that favour those holding power in the policy process or the use of procedures that fail to apply values of equity and participation. The identification and production of evidence that includes the interests of less powerful groups is a priority for HIA and would be furthered if a human rights-based method of HIA were developed. Because HIA considers all types of policies and examines all potential determinants of health, it can play a part when foreign policy is developed and global decisions are made to treat people as rights holders. Since the human right to health is shaped by the determinants of health, developing links between the right to health assessment (that is, an assessment of the impact of policies on the right to health) and HIA--as recently proposed by the United Nations Special Rapporteur on the right to health--could strengthen the development of foreign policy and global decisions. Such links should be pursued and applied to the development of foreign policy and to the operation of multilateral bodies.     

St Joseph's Community Health Centre model of community-based interdisciplinary health care team education

As our reliance on interdisciplinary health care teams for meeting the multidimensional needs of the community becomes greater, new interdisciplinary education programmes and learning experiences are needed to educate students and health care professionals to become better team players. The St Joseph's Community Health Centre (SJCHC) model of community-based interdisciplinary health care team education was developed with support from McMaster University and the Educational Centre for Aging and Health's Clinical Teaching Unit Without Walls. The SJCHC model is structured as one 3-h session each week for eight consecutive weeks and is an elective learning experience for students. Six to eight senior health, social science and other health-related students work with two group facilitators as a team on discussion theme topics: team dynamics; role issues and professional values; collaboration and conflict; communication, leadership and power; client-centred goal-oriented care; and consumerism issues. The success and impact of the SJCHC model has been measured by several primary and secondary outcomes outlined in the Charting the Outcomes of Educational and Clinical Approaches (COECA) model.     

A survey of the decision-making needs of Canadians faced with complex health decisions

Objective To describe the decision‐making needs of Canadians when faced with ‘complex’ health decisions characterized by balancing advantages against disadvantages. Although a national report emphasized that public confidence in the health‐care system depends on support for personal knowledge and decision‐making, there has been no systematic investigation of the Canadian population's decision‐making needs. Design Cross‐sectional telephone survey using random digit dialling. Participants National sample of 635 adults over 18 years of age, living in Canada. Results Forty‐two percentage of eligible contacts participated. Sixty‐five percent of contacts reported making ‘complex’ health decisions, commonly about medical or surgical treatments or birth control, and more commonly by women and by married/separated individuals. Most respondents took an active role in their decisions, often sharing the process with their partner or family. Being younger was associated with a more independent role. Physicians were more often involved in the decisions of respondents with less education. Fifty‐nine percent of respondents experienced decisional conflict; more conflict was seen with those who were female and feeling uninformed about options, pressured to select one particular option, and unready or unskilled in decision‐making. Less decisional conflict was seen in those who reported birth control decisions and in those who were 70 years and older. Participants used several strategies when deliberating about choices including: information gathering, clarifying their values, and seeking support and information from others. Personal counselling and printed information materials were commonly preferred methods of learning about options. ‘Essential’ criteria for judging satisfactory decision‐making included: having sufficient knowledge about the options, outcomes, and probabilities; being clear about values; selecting and implementing a choice that agrees with personal values; and expressing satisfaction with the choice. Conclusions Canadians, particularly women, face difficult decisions and need support and information from credible sources.     

Exploring 'person-centredness': user perspectives on a model of social psychiatry

This paper explores service users' experiences of a 'person-centred' mental health service. We describe the development of a model of social psychiatry that places the emphasis on the experiences of the person within social and political contexts. This establishes the foundations of a 'person-centred' approach, the values of which are described briefly. The results of interviews with 20 people are presented, in which their experiences of the service are explored in detail. These interviews reveal the struggle that lies at the heart of the professional-service user dialectic, which relates to issues of institutional power, roles and responsibility, and which places professional staff in conflict with the very notion of 'person-centredness'. No matter how 'person-centred' a mental health service may strive to be, there remain serious obstacles to the full realization of this approach. Despite this critique, there were many things that were valued by those who used the service. More detailed qualitative studies are required to explicate the complex relationships and paradoxes that emerged.     

"This glorious twilight zone of uncertainty": mental health consultations in general practice in New Zealand

General practitioners provide treatment for the majority of people diagnosed as having a mental disorder in New Zealand, but much research suggests that they fail to diagnose many common mental disorders. This paper explores the issue of GP recognition of mental health problems through four discussion groups with GPs from the lower half of the North Island of New Zealand. GPs were asked to consider what they thought their role was in relation to mental health, what facilitated discussion of mental health issues in consultations and what could influence patients to disclose mental health problems. The analysis of the data collected drew on thematic and discourse analysis. Four key domains that had an impact on the consultation were identified, which were categorised as practice pressures, socio-cultural factors, the medico-legal framework and the consultation process. GPs employ a number of strategies to respond to the systemic and social issues influencing the consultation. This research suggests that GPs do recognise mental health problems in patients, but that a number of important factors result in the consultations not being labeled as mental health ones. The paper concludes by offering a framework for the mental health consultation that illustrates the systemic issues that GPs consider when making decisions about mental health consultations.     

Social communication network analysis of the role of participatory research in the adoption of new fish consumption behaviors

The formulation and communication of fish advisories are highly complex because of the potential conflict between the nutritional and toxicological issues associated with fish consumption. Government and organization-sponsored fish advisories have had limited success in changing behaviors. Participatory approaches may enhance the understanding of complex issues and the adoption of new behaviors. Here we used social network analysis to investigate the adoption of dietary changes within the context of a community participatory research project. In the Brazilian Amazon, many communities are highly exposed to methylmercury from fish consumption. A participatory intervention based on dietary changes aimed at reducing methylmercury exposure while maintaining fish consumption was initiated in 1995. In 2001, we collected data on individual participation in the research, on the discussion network regarding mercury issues and on changes in fish consumption from 96 of the 110 village households. More than half of men and women had adopted new fish consumption behavior to reduce mercury exposure. Adoption was associated with participation in the research project for both women and men, and with a higher number of discussion partners about mercury issues for women. Adoption was likewise associated with the presence of a female communication partner in the personal networks of both men and women. At the household level, men and women who considered their spouse as a discussion partner were more likely to adopt than those who did not. Opinion le]adership was associated with change in fish consumption only for women. We discuss the contribution of community participation and communication networks to overcome the difficulties in generating complex messages that take into account both health benefits and risks of fish consumption. We also discuss the relevance of building preventive health programs based on participatory research approaches and the roles and relations specific to men and women.     

SUPPORT Tools for evidence-informed health Policymaking (STP) 14: Organising and using policy dialogues to support evidence-informed policymaking

This article is part of a series written for people responsible for making decisions about health policies and programmes and for those who support these decision makers.Policy dialogues allow research evidence to be considered together with the views, experiences and tacit knowledge of those who will be involved in, or affected by, future decisions about a high-priority issue. Increasing interest in the use of policy dialogues has been fuelled by a number of factors: 1. The recognition of the need for locally contextualised 'decision support' for policymakers and other stakeholders 2. The recognition that research evidence is only one input into the decision-making processes of policymakers and other stakeholders 3. The recognition that many stakeholders can add significant value to these processes, and 4. The recognition that many stakeholders can take action to address high-priority issues, and not just policymakers. In this article, we suggest questions to guide those organising and using policy dialogues to support evidence-informed policymaking. These are: 1. Does the dialogue address a high-priority issue? 2. Does the dialogue provide opportunities to discuss the problem, options to address the problem, and key implementation considerations? 3. Is the dialogue informed by a pre-circulated policy brief and by a discussion about the full range of factors that can influence the policymaking process? 4. Does the dialogue ensure fair representation among those who will be involved in, or affected by, future decisions related to the issue? 5. Does the dialogue engage a facilitator, follow a rule about not attributing comments to individuals, and not aim for consensus? 6. Are outputs produced and follow-up activities undertaken to support action?     

Whose preferences count?

An important consideration when choosing how to allocate health care resources is the improvements in patients' health-related quality of life (HRQoL) that alternative allocations generate. There is considerable debate about whose preferences should be used when measuring and valuing HRQoL. This debate has usually been in terms of whether the values of patients or the general public are the most appropriate. It is argued in this paper that this is a false dichotomy that does not facilitate understanding of empirical evidence. Nor, more importantly, does it address one of the most important issues in the debate about whose preferences count, that is, whether the fact that many people adapt to poor health states should be taken into account when ascribing values to those states. A conceptual framework is developed to facilitate a more fruitful discussion of the issues relating to the question of whose preferences should count.     

Measurement in Veterans Affairs Health Services Research: Veterans as a Special Population

Objective. To introduce this supplemental issue on measurement within health services research by using the population of U.S. veterans as an illustrative example of population and system influences on measurement quality.
Principal Findings. Measurement quality may be affected by differences in demographic characteristics, illness burden, psychological health, cultural identity, or health care setting. The U.S. veteran population and the VA health system represent a microcosm in which a broad range of measurement issues can be assessed.
Conclusions. Measurement is the foundation on which health decisions are made. Poor measurement quality can affect both the quality of health care decisions and decisions about health care policy. The accompanying articles in this issue highlight a subset of measurement issues that have applicability to the broad community of health services research. It is our hope that they stimulate a broad discussion of the measurement challenges posed by conducting "state-of-the-art" health services research.     

Care of the comatose patient: building mutual staff values

Recognizing individuals' value differences is important to the success of health teams that care for comatose patients, since decisions to withhold or withdraw life-support treatment may lead to conflicts among team members. Such conflicts can adversely affect professional and family relationships. For example, health care personnel cannot work together in harmony or help the family effectively if they disagree about treatment decisions. Although institutional procedures for "do not resuscitate" orders, the treatment of incompetent patients, and other complex issues are helpful, they rarely address value conflicts, which inevitably influence a problem's resolution. Staff members therefore must acknowledge and confront differences they have faced. Such reflection enables catharsis as well as reconciliation of unresolved conflict and permits the group to develop guidelines for future situations. A fictional case also may be used to help work groups gain an understanding of the need for community. Ideally, the team members will sharpen their decision-making skills and gain the confidence to make tough choices in an imperfect, unpredictable world.