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The purpose of this paper is to provide and explain the model that underlies most of the research reported within this special issue on “Patient involvement in health care across Europe”.

This introduction provides a literature review and a conceptual framework for the understanding of patient involvement and its potential development within health care across Europe.

Patient involvement can be characterised in terms of three ideal types: voice, choice and co-production. Policies for developing user involvement in healthcare can have disempowering as well as empowering consequences. The pattern of dissemination of user involvement across Europe varies in form and content largely due to path dependency.

The paper provides a template for future comparative research on user involvement in health care and one that could be extended to social care as well as other varieties of human services. This introduction and the special issue highlights the need for further comparative research in this area.

The paper presents a robust model for comparative research. The findings may well be useful not only to researchers but also to policy makers and analysts.

Encouraging patient involvement is a cornerstone of many healthcare interventions and decision-making models to ensure that treatment decisions reflect the needs, values, and desires of patients. Involved patients are thought to be empowered patients who feel a sense of efficacy in regards to their own health. However, there is a lack of understanding of how patients relate to empowerment and involvement and, most importantly, how these constructs relate to one another in patients’ decision-making experiences.

Through an inductive analysis, this chapter draws on qualitative interviews of women diagnosed with breast cancer prior to 40 years of age (n = 69).

By examining the intersection of how patients define their own involvement in treatment decisions and their sense of empowerment, we find four orientations to decision-making (Advocates, Bystanders, Co-Pilots, and Downplayers) with involvement and empowerment being coupled for some respondents, but decoupled for others.

Our findings suggest expanding what it means to be an “active” patient as respondents had multiple ways of characterizing involvement, including being informed or following their doctor’s advice. Our findings also suggest a more critical examination of the origins and potential downsides of patient empowerment as some respondents reported feeling overwhelmed or pushed into advocacy roles. The sample was disproportionately higher socioeconomic status with limited racial/ethnic diversity. Empowerment and involvement may be enacted differently for other social groups and other medical conditions.

By examining first-person patient narratives, we conclude that patients’ experience may not fully align with current academic or clinical discussions of patient involvement or empowerment.

The purpose of this paper is to analyse the accounts of Swedish cardiologists concerning patient involvement in consultations for atrial fibrillation (AF). The questions were: how cardiologists handle and provide scope for patient involvement in medical consultations regarding AF treatment and how cardiologists describe their familiarity with shared decision-making.

A descriptive study was designed. Ten interviews with cardiologists at four Swedish hospitals were held, and a qualitative content analysis was performed on the collected data.

The analysis shows cardiologists’ accounts of persuasive practice, protective practice, professional role and medical craftsmanship when it comes to patient involvement and shared decision-making. The term “shared decision-making” implies a concept of not only making one decision but also ensuring that it is finalised with a satisfactory agreement between both parties involved, the patient as well as the cardiologist. In order for the idea of patient involvement to be fulfilled, the two parties involved must have equal power, which can never actually be guaranteed.

Methodologically, this paper reflects the special contribution that can be made by the research design of descriptive qualitative content analysis (Krippendorff, 2004) to reveal and understand cardiologists’ perspectives on patient involvement and participation in medical consultation and shared decision-making. The utility of this kind of analysis is to find what cardiologists said and how they arrived at their understanding about patient involvement. Accordingly, there is no quantification in this type of research.

Cardiologists should prioritise patient involvement and participation in decision-making regarding AF treatment decisions in consultations when trying to meet the request of patient involvement.

Theoretically, the authors have learned that the patient involvement and shared decision-making requires the ability to see patients as active participants in the medical consultation process.

The purpose of this paper is to consider the issues which emerge when an autonomous, professional, member‐led organisation attempts to demonstrate its accountability to patients through lay involvement in its standard‐setting processes.

The paper reports a project, which is still in progress and could be described as action research. Data were collected through participant observation in a series of discussions and working groups. A limited literature search was carried out at the start of the initiative but found little which relates to lay involvement in professional bodies.

The paper finds that patient involvement in a professional body is unlikely by itself to be a useful mechanism for delivering greater professional accountability.

The paper is a single case study and can only suggest hypotheses for further research.

The paper shows that professional bodies of various types are increasingly being asked to demonstrate public involvement in their decision making. It is important to identify the most effective mechanisms for this and the limitations inherent in the structures of organisations, which are accountable primarily to their members.

The paper shows that individual doctors are held to account through a number of mechanisms, but little attention has been given to how medical professional bodies can be made more accountable for the collective power they hold. Patient involvement is interpreted within a consumerist model, which focuses on the doctor‐patient relationship and ignores the considerable strategic influence which medical royal colleges exercise within the health service.

The purpose of this paper is to investigate different types of patient involvement in Denmark, and to discuss the potential implications of pursuing several strategies for patient involvement simultaneously.

The paper presents a preliminary framework for analysis of patient involvement in health care. This framework is used to analyze key governance features of patient involvement in Denmark based on previous research papers and reports describing patient involvement in Danish health care.

Patient involvement is important in Denmark at the rhetorical level, and many policies and initiatives have been introduced. All three governance forms (voice, choice and co-production) are used. However, there are important barriers and limitations in translating the rhetoric into practice, and potential synergy and negative synergy effects can be identified when pursuing the strategies at the same time.

Because of the chosen research approach, the research results may lack generalizability. Therefore, researchers are encouraged to test the proposed framework further.

The paper includes implications for the development of patient involvement in health care.

This paper fulfills a need to study different types of patient involvement and to develop a theoretical framework for characterizing and analyzing such involvement strategies.

Primary care groups (PCGs) and primary care trusts (PCTs) are required to ensure that patient and public involvement underpins all activity. In Part 1, the literature review revealed many challenges to implementing this important measure of performance that would test those with responsibility for achieving a meaningful outcome for all stakeholders. Part 2 reports on a local study that used qualitative data from key stakeholders to examine how one PCG was responding to the involvement agenda. The findings revealed cynicism and doubt among board members about the purpose and value of involvement, despite which some progress had been made in engaging with local voluntary groups. However, the experience of involvement among local patients had not always been a positive one. It is suggested that issues of power and organisational culture will need to be tackled through greater investment in clinical and managerial staff development.

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.

Patient involvement in the design and improvement of health services is increasingly recognized as an essential part of patient-centred care. Yet little research, and no measurement tool, has addressed the organizational impacts of such involvement. The paper aims to discuss these issues.

The authors developed and piloted the scoresheet for tangible effects of patient participation (STEPP) to measure the instrumental use of patient input. Its items assess the magnitude of each recommendation or issue brought forward by patients, the extent of the organization’s response, and the apparent degree of patient influence on this response. In collaboration with teams (staff) from five involvement initiatives, the authors collected interview and documentary data and scored the STEPP, first independently then jointly. Feedback meetings and a “challenges log” supported ongoing improvement.

Although researchers’ and teams’ initial scores often diverged, the authors quickly reached consensus as new information was shared. Composite scores appeared to credibly reflect the degree of organizational impact, and were associated with salient features of the involvement initiatives. Teams described the STEPP as easy to use and useful for monitoring and accountability purposes. The tool seemed most suitable for initiatives in which patients generated novel, concrete recommendations; less so for broad public consultations of which instrumental use was not a primary goal.

The STEPP is a promising, first-in-class tool with potential usefulness to both researchers and practitioners. With further research to better establish its reliability and validity, it could make a valuable contribution to full mixed-methods evaluation of patient involvement.

The purpose of this paper is to explore how healthcare-users’ engagement is perceived, how it occurs and how these perceptions differ between three European countries: England, Poland and Slovenia, using the concepts of voice, choice and coproduction.

This comparative, qualitative study is based on a review of legal documents, academic literature and semi-structured interviews conducted in October and November 2011. A research sample consisted of 21 interviewees representing various stakeholders including healthcare-users, doctors and managers. Primary and secondary data were analysed using theoretical thematic analysis. Emerging themes were identified from the interviews and related to the indicators describing healthcare-users’ involvement in the voice, choice and coproduction model.

Results of the comparative qualitative research suggest that the healthcare-users’ influence is strongly grounded in England where the healthcare system and professionals are prepared to include healthcare-users in the decision-making process. In Slovenia, cultural development of healthcare-users’ involvement seems to proceed the institutional development. In Poland, institutions are ready to involve healthcare-users in decision-making process although the cultural desirability of involving users among doctors and patients is lacking.

The notion of user involvement is increasingly gaining importance and research attention, yet there is still little known about the way cultural, political, historical differences between various European countries influence it. This paper explores this little known area using the original approach of user involvement (Dent et al., 2011) with input from various stakeholders including patients, healthcare representatives and academics.

This paper summarises five years' experience of patient and public involvement in primary care, citing examples from the Lanark practice and Clydesdale Local Health Care Co‐operative (LHCC) in Lanarkshire, Scotland. Strategic development and models which align primary care structures within a framework for patient and public involvement are described, along with barriers to implementation. Examples derived from clinical governance, health promotion and needs assessment include patient and carer involvement in significant event analysis and audit, joint training and patient‐held record cards. Positive outcomes reported are effective dialogue between health professionals, patients and the public, service developments and quality improvements. The success of initiatives is retrospectively assessed against the Audit Commission's critical success factors.