Getting involved: the extent and impact of patient and public involvement in the Swedish health system

Fredriksson, Mio; Tritter, Jonathan

doi:10.1017/s174413311900015x

Cited by 4 publications

(4 citation statements)

References 44 publications

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“…The grouping of participants under a collective term is contentious given the lack of homogeneity across patients, public, carers and service users, which fails to account for differences within groups [ 37 ]. The present research accepts the inherent problem in the ‘PPIE’ term, however as per NIHR INVOLVE [ 1 ]the present study considers patients, carers and service users as members of the public.…”

Section: Discussionmentioning

confidence: 99%

The role of patient and public involvement in rapid qualitative studies: Can we carry out meaningful PPIE with time pressures?

2022

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Introduction Rapid qualitative studies conducted with patient and public involvement can help promote policy-relevant and efficient research. There is a need to understand the experiences of researchers, patients, and members of the public to guide the development of good practice and to determine the extent to which rapid qualitative research can be implemented in PPIE projects. Methods We conducted a qualitative study to explore the experiences of research teams that carried out studies using rapid techniques with patient and public involvement. We carried out 26 interviews with researchers, coordinators, patients, carers, service users and members of the public. Results This study identified needs which related to practical and time constraints. Rapid qualitative research tends to be limited to certain PPIE groups, and particular phases of the research process. Study findings are rarely discussed with PPIE members. The educational needs of rapid qualitative research were also identified. Researchers and PPIE members considered three main issues: a lack of training on patient involvement for researchers, rapid qualitative research training for PPIE members, and the diversity of PPIE members. Conclusion We found that rapid researchers were able to involve patients and members of the public in research despite time pressures. The challenges identified in this study can be used to plan future training programmes for researchers and PPIE panel members and develop strategies to recruit PPIE panel members from a wide range of backgrounds. Public contribution The research aim was to explore the experiences of those carrying out rapid qualitative studies with PPIE. As such, the participants of this study included patients, carers, service users and members of the public, who were interviewed individually. A lived experienced researcher and PPIE member for a hospital conducted the design, data collection and analysis of the study. The study brief was to interview researchers only. The lived-experience researcher initiated the inclusion of PPIE members as participants, therefore strengthening the study design. We shared the draft report with the PPIE participants for participant validation and to maintain a continuous feedback relationship. This led to addressing key issues in designing and involving PPIE members in more meaningful and equal ways. Whilst there is agreement on activities which centre on PPIE, there is no consensus on how to achieve these in high quality rapid qualitative studies.

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Section: Discussionmentioning

confidence: 99%

The role of patient and public involvement in rapid qualitative studies: Can we carry out meaningful PPIE with time pressures?

2022

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“… Modified framework for CDs based on Abelson et al (2003) [ 30 ] a Categorising guided by a survey conducted by Demokratiutredningen and SALAR (2015) [ 40 ] b Categorising guided by SALAR ladder of involvement inspired by Arnstein [ 26 ] c Categorising guided by a survey conducted by Gilljam, Karlsson & Sandell (2010) [ 41 ] …”

Section: Methodsmentioning

confidence: 99%

“…It is a national health service system, but highly decentralised. The system is based on a model were the responsibility for healthcare is divided between three levels of government [ 40 ]. The Swedish state is responsible for overall healthcare policy, while responsibility for funding and provision of healthcare lies primarily with the regions (the municipalities are responsible for care for elderly and disabled) [ 41 ].…”

Section: Introductionmentioning

confidence: 99%

Public involvement in the Swedish health system: citizen dialogues with unclear outcomes

Fredriksson,

Modigh

2023

BMC Health Serv Res

Self Cite

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Background In systems with representative democracy, there is a growing consensus that citizens should have the possibility to participate in decisions that affect them, extending beyond just voting in national or local/regional elections. However, significant uncertainty remains regarding the role of public involvement in decision-making, not least in healthcare. In this article, we focus on citizen dialogues (CDs) in a health system that is politically governed and decentralised. The aim of the study was to evaluate the functioning of citizen dialogues in the Swedish health system in terms of representation, process, content, and outcomes. Methods This study was conducted using a qualitative case design focusing on CDs at the regional level in Sweden. The regional level is politically elected and responsible for funding and provision of healthcare. The data consist of public documents describing and evaluating the CDs and interviews, which were analysed drawing on a modified version of the Abelson et al. analytical framework for evaluating public involvement in healthcare. Results Some CDs were an attempt to counteract political inequality by inviting groups that are less represented, while others aimed to increase legitimacy by reducing the distance between policymakers and citizens. The results from the CDs—which were often held in the beginning of a potential policy process—were often stated to be used as input in decision-making, but how was not made clear. Generally, the CDs formed an opportunity for members of the public to express preferences (on a broad topic) rather than developing preferences, with a risk of suggestions being too unspecific to be useful in decision-making. The more disinterested public perspective, in comparison with patients, reinforced the risk of triviality. A need for better follow-up on the impact of the CDs on actual decision-making was mentioned as a necessary step for progress. Conclusions It is unclear how input from CDs is used in policymaking in the politically governed regions responsible for healthcare in Sweden. The analysis points to policy input from CDs being too general and a lack of documentation of how it is used. We need to know more about how much weight input from CDs carry in relation to other types of information that politicians use, and in relation to other types of patient and public involvement.

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“…Opportunities have been made for recovery‐focused care, including development of plans with the input of supported consumers (Reid et al ). There needs to be a consistent approach that is part of everyday routine and not tokenistic (Manias ; Reid et al ) as suggested by Fredriksson and Tritter (), most of the time consultation is more often the norm, than true collaboration.…”

Section: Introductionmentioning

confidence: 99%

The benefits of consumer involvement in nursing handover on acute inpatient unit: Post‐implementation views

Olasoji

Plummer

Shanti

et al. 2020

Int J Mental Health Nurs

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The involvement of consumers in handover with nurses has been identified as reducing miscommunication between transitions in care and associated with reduction in adverse events in generalist nursing settings. The notion of having consumers present in nursing handover on acute mental health inpatient unit remains a relatively new concept. Central to recovery-focused mental health care is the consumer's active participation in the delivery of their care. The aim of this study was to explore the views of consumers with a mental illness about their experiences of being involved in nursing handover on acute mental health inpatient unit post-implementation of a new nursing handover involving consumers. Using an exploratory descriptive qualitative design, participants (N = 10) were recruited using purposive convenience sampling. Semi-structured interviews were undertaken, and the data were thematically analysed. Participants' principal diagnoses were schizophrenia (n = 2), schizoaffective disorder (n = 3), bipolar affective disorder (n = 2), borderline personality disorder (n = 1), and depression (n = 2). Three themes were generated from the interviews: (i) Knowing who, (ii) Shared decision-making, with subthemes: my voice was heard and not just a meet and greet, and (iii) Having time and space. The delivery of mental health care needs to put the consumer at the centre of such care regardless of the setting. In line with recovery-focused principles, the consumer's active involvement in the crucial activity of nursing handover on acute mental health inpatient unit is very important. The study has implications for ensuring consumer voices are heard in all aspects of their care delivery.

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Getting involved: the extent and impact of patient and public involvement in the Swedish health system

Cited by 4 publications

References 44 publications

The role of patient and public involvement in rapid qualitative studies: Can we carry out meaningful PPIE with time pressures?

The role of patient and public involvement in rapid qualitative studies: Can we carry out meaningful PPIE with time pressures?

Public involvement in the Swedish health system: citizen dialogues with unclear outcomes

The benefits of consumer involvement in nursing handover on acute inpatient unit: Post‐implementation views

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