User Involvement In Health Care Research Articles

Patient empowerment and involvement in telemedicine

Objective: Telemedicine is a rapidly expanding area, and this article discusses the implications of patient empowerment and user involvement in relation to frail patients. Our aim is to critique the mechanical way telemedicine is being implemented in the health sector.Methods: We present the basic ideas of empowerment and user involvement behind telemedicine, exemplifying them with a case of user resistance to telemedicine. Four logics of empowerment are employed to identify the underlying rationale in specific cases of telemedicine. The case comes from a large evaluation of new welfare technology products. The data consist mainly of written documents and an interview.Results: Telemedicine is often considered a way to increase empowerment and user involvement in healthcare. The majority of the geriatric patients in the described case refused to engage in telemedicine, preferring instead to be hospitalized. The case appeared to be driven primarily by a professional logic of empowerment. User involvement and empowerment are discussed in terms of their demands and implication for users, such as 1) intrusion on the private sphere, i.e., the home and 2) the question of the responsibility for treatment and 3) the expectation, that the capabilities and resources of patients and relatives may increase.Conclusions: Although telemedicine is acknowledged as relevant, a mechanical approach too often hampers empowerment for the patient. Some patient groups may not feel safe using telemedicine, in which case user involvement and empowerment are not possible.

User involvement in adolescents’ mental healthcare: protocol for a systematic review

IntroductionUser involvement has become a growing importance in healthcare. The United Nations state that adolescents have a right to be heard, and user involvement in healthcare is a legal right...

Controversies about cervical cancer screening: A qualitative study of Roma women's (non)participation in cervical cancer screening in Romania

Romania has Europe's highest incidence and mortality of cervical cancer. While a free national cervical cancer-screening programme has been in operation since 2012, participation in the programme is low, particularly in minority populations. The aim of this study was to explore Roma women's (non)participation in the programme from women's own perspectives and those of healthcare providers and policy makers. We carried out fieldwork for a period of 125 days in 2015/16 involving 144 study participants in Cluj and Bucharest counties. Fieldwork entailed participant observation, qualitative interviewing and focus group discussions. A striking finding was that screening providers and Roma women had highly different takes on the national screening programme. We identified four fundamental questions about which there was considerable disagreement between them: whether a free national screening programme existed in the first place, whether Roma women were meant to be included in the programme if it did, whether Roma women wanted to take part in screening, and to what degree screening participation would really benefit women's health. On the background of insights from actor-network theory, the article discusses to what degree the programme could be said to speak to the interest of its intended Roma public, and considers the controversies in light of the literature on patient centred care and user involvement in health care. The paper contributes to the understanding of the health and health-related circumstances of the largest minority in Europe. It also problematizes the use of the concept of “barriers” in research into participation in cancer screening, and exemplifies how user involvement can potentially help transform and improve screening programmes.

Women's mental health during pregnancy: A participatory qualitative study.

British public health and academic policy and guidance promotes service user involvement in health care and research, however collaborative research remains underrepresented in literature relating to pregnant women's mental health. The aim of this participatory research was to explore mothers' and professionals' perspectives on the factors that influence pregnant women's mental health. This qualitative research was undertaken in England with the involvement of three community members who had firsthand experience of mental health problems during pregnancy. All members of the team were involved in study design, recruitment, data generation and different stages of thematic analysis. Data were transcribed for individual and group discussions with 17 women who self-identified as experiencing mental health problems during pregnancy and 15 professionals who work with this group. Means of establishing trustworthiness included triangulation, researcher reflexivity, peer debriefing and comprehensive data analysis. Significant areas of commonality were identified between mothers' and professionals' perspectives on factors that undermine women's mental health during pregnancy and what is needed to support women's mental health. Analysis of data is provided with particular reference to contexts of relational, systemic and ecological conditions in women's lives. Women's mental health is predominantly undermined or supported by relational, experiential and material factors. The local context of socio-economic deprivation is a significant influence on women's mental health and service requirements.

User involvement in Slovenian healthcare

The purpose of this paper is to report on current developments in user involvement in healthcare in Slovenia and to explore the issue from the macro-, mezzo- and micro-levels. User involvement is first contextualised within history of the organisation of healthcare system, from its socialist past through to its post-transitional developments. Second, user involvement is tracked through an analysis of healthcare policies and legislation as well as at its institutional and organisational levels. Finally, user involvement practices are illustrated from the perspective of individual patients. A descriptive and exploratory case study design was employed, including a literature review, document analysis and qualitative thematic analysis of nine in-depth and four semi-structured interviews. The findings reveal a complex and at times ambivalent picture in which user involvement is still not firmly embedded into the healthcare system, despite being generally accepted. No systematic qualitative research of patient involvement in Slovenia has previously been published. This research will establish a basis for further investigations of the topic.

Increasing User Involvement in Health Care and Health Research Simultaneously: A Proto-Protocol for "Person-as-Researcher" and Online Decision Support Tools.

BackgroundUser involvement is appearing increasingly on policy agendas in many countries, with a variety of proposals for facilitating it. The belief is that it will produce better health for individuals and community, as well as demonstrate greater respect for the basic principles of autonomy and democracy.ObjectiveOur Web-based project aims to increase involvement in health care and health research and is presented in the form of an umbrella protocol for a set of project-specific protocols. We conceptualize the person as a researcher engaged in a continual, living, informal “n-of-1”-type study of the effects of different actions and interventions on their health, including those implying contact with health care services. We see their research as primarily carried out in order to make better decisions for themselves, but they can offer to contribute the results to the wider population. We see the efforts of the "person-as-researcher" as contributing to the total amount of research undertaken in the community, with research not being confined to that undertaken by professional researchers and institutions. This view is fundamentally compatible with both the emancipatory and conventional approaches to increased user involvement, though somewhat more aligned with the former.MethodsOur online decision support tools, delivered directly to the person in the community and openly accessible, are to be seen as research resources. They will take the form of interactive decision aids for a variety of specific health conditions, as well as a generic one that supports all health and health care decisions through its focus on key aspects of decision quality. We present a high-level protocol for the condition-specific studies that will implement our approach, organized within the Populations, Interventions, Comparators, Outcomes, Timings, and Settings (PICOTS) framework.ResultsOur underlying hypothesis concerns the person-as-researcher who is equipped with a prescriptive, transparent, expected value-based opinion—an opinion that combines their criterion importance weights with the Best Estimates Available Now for how well each of the available options performs on each of those outcomes. The hypothesis is that this person-as-researcher is more likely to be able to position themselves as an active participant in a clinical encounter, if they wish, than someone who has engaged with a descriptive decision aid that attempts to work with their existing cognitive processes and stresses the importance of information. The precise way this is hypothesis tested will be setting-specific and condition-specific and will be spelled out in the individual project protocols.ConclusionsDecision resources that provide fast access to the results of slower thinking can provide the stimulus that many individuals need to take a more involved role in their own health. Our project, advanced simply as one approach to increased user involvement, is designed to make progress in the short term with minimal resources and to do so at the point of decision need, when motivation is highest. Some basic distinctions, such as those between science and non-science, research and practice, community and individual, and lay and professional become somewhat blurred and may need to be rethought in light of this approach.

The making of ‘professional amateurs’

The aim of this article is, through empirical material from Norway, to grasp a particular form of non-profit professionalization spurred by the incorporation of policies of service user involvement in health care and in social services. By drawing on perspectives from the research on professionalization, our ambition is to increase the understanding of the nature of this form of professionalization, how it differs from other kinds of professionalization in the non-profit sector and why it achieves its distinctive features. We denote the professionalization of service users’ work as representatives, as the making of ‘professional amateurs’ to capture its paradoxical nature – that while the process of professionalization resembles occupational professionalization, the voluntary workers who are becoming professionalized are still amateurs. It is professionalization in the form of increasing the competence of the voluntary workers, not professionalization through transforming voluntary work tasks into occupations and paid employment. It is a form of competence fundamentally resting on personal experience with the issues with which the work is concerned, not a competence to be achieved solely through education and professional training.

User involvement: beyond the tick-box.

The delivery of person-centred care is central to current healthcare policy. To achieve a person-centred service, patients must be placed at the heart of the NHS and considered ‘co-producers’ of their care and recovery (Department of Health (DH), 2010; Scottish Government, 2010). User involvement in health care is multifaceted and can occur at many points in the patient journey (Health Foundation, 2014). Ensuring that patients are involved in decision-making about their care is one approach to user involvement (Coulter and Collins, 2011). A further example of patient and family participation involves active partnership with people who use specific services (Forbat et al, 2009). Within this model, choices are made collectively about service organisation and delivery (Angood et al, 2010). It is now firmly embedded in UK healthcare policy that service users must be involved in decision-making with regard to service design and delivery (Scottish Government, 2010; NHS England, 2012). Undoubtedly, with these political drivers, there has been increasing engagement with service users in healthcare design. However, there is little guidance about what constitutes user involvement. The wider challenge is that it is difficult to evaluate what user involvement really means and, most importantly, how it can be measured to ensure that it is a meaningful interaction. This article critically reflects on some simple and practical techniques that can be used to ensure that user involvement in healthcare delivery and design is meaningful.

Older people as health service consumers: background to a study.

User involvement in health care has received a high profile within the NHS Plan (Department of Health, 2000a), giving patients a greater say in their treatment and in the way that the NHS works. Older people, i.e. those over 65 years of age, as a group, are the highest users of hospital and community services (DH, 2001a). The national service framework (NSF) for older people (DH, 2001a) highlights the need to listen to older people, help them make informed choices and involve them in achieving a healthy lifestyle. While the NSF for older people rightly attempts to ensure fair and equitable access to health care services for older people, it is assumed that they want to be involved, and want to exercise their rights as users. This assumption needs to be tested. This study, presented as a series of four articles, sets out to explore if there is a consumerist ethic among older people in relation to health care. The first paper outlines some of the literature reviewed together with the methodology.

Which Champions, Which People? Public and User Involvement in Health Care as a Technology of Legitimation

This paper concerns two practices, public consultation and user involvement, whose adoption has been urged upon the UK National Health Service in recent years. Public consultation is a local attempt to seek the views of a broad constituency of persons. User involvement is a local attempt to include organized groups of service users in the planning, and occasionally the management, of such services. The paper has four objectives. First, it locates the topic in the context of several related current debates. Second, it outlines the main findings of a recent empirical study of public consultation as they relate to the above debates. Third, it summarizes the relevant findings of an empirical study of user involvement. Finally, it examines these two practices as “technologies of legitimation” which can be seen as a means by which managerial legitimacy is maintained in the context of an increasingly pluralistic policy arena.

The price of going public

In the last of her series on developing user-involvement in healthcare, Colleen Wedderburn Tate argues that a management revolution will have to occur if services are to become fully people-responsive