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1.
Res Involv Engagem ; 10(1): 15, 2024 Jan 29.
Article in English | MEDLINE | ID: mdl-38287410

ABSTRACT

BACKGROUND: Some research has been undertaken into the mechanisms that shape successful participatory approaches in the context of efforts to improve health and social care. However, greater attention needs to be directed to how partnerships between researchers and user-led organisations (ULOs) might best be formed, practiced, managed, and assessed. We explored whether political economist Elinor Ostrom's Nobel prize winning analysis of common pool resource management-specifically eight principles to enhance collaborative group working as derived from her empirical research-could be usefully applied within a user-led project aiming to co-design new services to support more inclusive involvement of Disabled people in decision-making processes in policy and practice. METHODS: Participant observation and participatory methods over a 16-month period comprising observational notes of online user-led meetings (26 h), online study team meetings (20 h), online Joint Interpretive Forum meetings (8 h), and semi-structured one-to-one interviews with project participants (44 h) at two time points (months 6 and 10). RESULTS: Initially it proved difficult to establish working practices informed by Ostrom's principles for collaborative group working within the user-led project. Several attempts were made to put a structure in place that met the needs of both the research study and the aims of the user-led project, but this was not straightforward. An important shift saw a move away from directly applying the principles to the working practices of the group and instead applying them to specific tasks the group were undertaking. This was a helpful realisation which enabled the principles to become-for most but not all participants-a useful facilitation device in the latter stages of the project. Eventually we applied the principles in a way that was useful and enabled collaboration between researchers and a ULO (albeit in unexpected ways). CONCLUSIONS: Our joint reflections emphasise the importance of being reflexive and responsive when seeking to apply theories of collaboration (the principles) within user-led work. At an early stage, it is important to agree shared definitions and understanding of what 'user-led' means in practice. It is crucial to actively adapt and translate the principles in ways that make them more accessible and applicable within groups where prior knowledge of their origins is both unlikely and unnecessary.


Academic researchers and members of Shaping Our Lives­a national network and user-led organisation of Disabled people and service users­came together to explore whether Elinor Ostrom's Nobel Prize winning work on collaborative group working could usefully inform efforts to co-design new services to promote the inclusive involvement of Disabled people in decision-making processes. We wanted to see if Ostrom's 'principles for collaborative group working' were relevant to and could perhaps facilitate a co-design process led by a user led organisation. At first, we struggled to decide how Ostrom's principles might inform the user-led project. We tried different ways to achieve this and eventually found an approach that most but not all of us found helpful. An important change we made was to stop focusing on how the members of the user-led group were collaborating together and instead to apply the principles to specific aspects of the co-design project that were complex and could be responded to in multiple ways. By the end of the 16-month study we had found a way of using the principles to better enable collaboration between academic researchers and a user-led organisation (although not in the way we had initially anticipated). We learned how Ostrom's principles could be used to facilitate discussion of aspects of project work that are complex and the pros and cons of different plans of action. This project has demonstrated that collaboration between researchers and user-led organisations can be challenging but also has great potential for shared learning.

2.
Article in English | MEDLINE | ID: mdl-33922547

ABSTRACT

Information received by women regarding physical activity during and after pregnancy often lacks clarity and may be conflicting and confusing. Without clear, engaging, accessible guidance centred on the experiences of pregnancy and parenting, the benefits of physical activity can be lost. We describe a collaborative process to inform the design of evidence-based, user-centred physical activity resources which reflect diverse experiences of pregnancy and early parenthood. Two iterative, collaborative phases involving patient and public involvement (PPI) workshops, a scoping survey (n = 553) and stakeholder events engaged women and maternity, policy and physical activity stakeholders to inform pilot resource development. These activities shaped understanding of challenges experienced by maternity and physical activity service providers, pregnant women and new mothers in relation to supporting physical activity. Working collaboratively with women and stakeholders, we co-designed pilot resources and identified important considerations for future resource development. Outcomes and lessons learned from this process will inform further work to support physical activity during pregnancy and beyond, but also wider health research where such collaborative approaches are important. We hope that drawing on our experiences and sharing outcomes from this work provide useful information for researchers, healthcare professionals, policy makers and those involved in supporting physical activity behaviour.


Subject(s)
Exercise , Patient Participation , Female , Health Personnel , Humans , Mothers , Pregnancy , Pregnant Women
3.
Int J Integr Care ; 21(1): 7, 2021 Feb 12.
Article in English | MEDLINE | ID: mdl-33613139

ABSTRACT

INTRODUCTION: Increased interest in collaborative and inclusive approaches to healthcare improvement makes revisiting Elinor Ostrom's 'design principles' for enabling collective management of common pool resources (CPR) in polycentric systems a timely endeavour. THEORY AND METHOD: Ostrom proposed a generalisable set of eight core design principles for the efficacy of groups. To consider the utility of Ostrom's principles for the planning, delivery, and evaluation of future health(care) improvement we retrospectively apply them to a recent co-design project. RESULTS: Three distinct aspects of co-design were identified through consideration of the principles. These related to: (1) understanding and mapping the system (2) upholding democratic values and (3) regulating participation. Within these aspects four of Ostrom's eight principles were inherently observed. Consideration of the remaining four principles could have enhanced the systemic impact of the co-design process. DISCUSSION: Reconceptualising co-design through the lens of CPR offers new insights into the successful system-wide application of such approaches for the purpose of health(care) improvement. CONCLUSION: The eight design principles - and the relationships between them - form a heuristic that can support the planning, delivery, and evaluation of future healthcare improvement projects adopting co-design. They may help to address questions of how to scale up and embed such approaches as self-sustaining in wider systems.

4.
J Med Ethics ; 2020 Oct 06.
Article in English | MEDLINE | ID: mdl-33023977

ABSTRACT

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance.

5.
Health Res Policy Syst ; 18(1): 43, 2020 05 07.
Article in English | MEDLINE | ID: mdl-32380998

ABSTRACT

This article is a response to Oliver et al.'s Commentary 'The dark side of coproduction: do the costs outweigh the benefits for health research?' recently published in Health Research Policy and Systems (2019, 17:33). The original commentary raises some important questions about how and when to co-produce health research, including highlighting various professional costs to those involved. However, we identify four related limitations in their inquiry, as follows: (1) the adoption of a problematically expansive definition of co-production that fails to acknowledge key features that distinguish co-production from broader collaboration; (2) a strong focus on technocratic rationales for co-producing research and a relative neglect of democratic rationales; (3) the transposition of legitimate concerns relating to collaboration between researchers and practitioners onto work with patients, service users and marginalised citizens; and (4) the presentation of bad practice as an inherent flaw, or indeed 'dark side', of co-production without attending to the corrupting influence of contextual factors within academic research that facilitate and even promote such malpractice. The Commentary's limitations can be seen to reflect the contemporary use of the term 'co-production' more broadly. We describe this phenomenon as 'cobiquity' - an apparent appetite for participatory research practice and increased emphasis on partnership working, in combination with the related emergence of a plethora of 'co' words, promoting a conflation of meanings and practices from different collaborative traditions. This phenomenon commonly leads to a misappropriation of the term 'co-production'. Our main motivation is to address this imprecision and the detrimental impact it has on efforts to enable co-production with marginalised and disadvantaged groups. We conclude that Oliver et al. stray too close to 'the problem' of 'co-production' seeing only the dark side rather than what is casting the shadows. We warn against such a restricted view and argue for greater scrutiny of the structural factors that largely explain academia's failure to accommodate and promote the egalitarian and utilitarian potential of co-produced research.


Subject(s)
Health Policy , Motivation , Humans , Research Personnel
6.
Health (London) ; 24(4): 421-441, 2020 07.
Article in English | MEDLINE | ID: mdl-30428717

ABSTRACT

The dominant obesity discourse which emphasises individual moral responsibility and lifestyle modification encourages weight-based stigma. Existing research overwhelmingly demonstrates that obesity stigma is an ineffective means by which to reduce the incidence of obesity and that it promotes weight-gain. However, the sensate experiences associated with the subjective experience of obesity stigma as a reflexively embodied phenomenon have been largely unexamined. This article addresses this knowledge gap by providing a phenomenological account. Data are derived from 11 months of ethnographic participant observation and semi-structured interviews with three single-sex weight-loss groups in England. Group members were predominantly overweight/obese and of low-socio-economic status. The analysis triangulates these two data sources to investigate what/how obesity stigma made group members feel. We find that obesity stigma confused participant's objective and subjective experiences of their bodies. This was primarily evident on occasions when group members felt heavier after engaging in behaviours associated with weight-gain but this 'weight' did not register on the weighing scales. We conceptualise this as the weight of expectation which is taken as illustrative of the perpetual uncertainty and morality that characterises weight-management. In addition, we show that respondents ascribed their sensate experiences of physiological responses to exercise with moral and social significance. These carnal cues provided a sense of certainty and played an important role in attempts to negotiate obesity stigma. These findings deepen the understanding of how and why obesity stigma is an inappropriate and ineffective means of promoting weight-loss.


Subject(s)
Motivation , Obesity/psychology , Social Stigma , Anthropology, Cultural , England , Exercise/psychology , Female , Humans , Interviews as Topic , Life Style , Male , Poverty
8.
Sports Med ; 49(4): 637-639, 2019 04.
Article in English | MEDLINE | ID: mdl-30706236

Subject(s)
Exercise , Goals , Humans , Motivation
9.
Sociol Health Illn ; 41(1): 20-35, 2019 01.
Article in English | MEDLINE | ID: mdl-30073681

ABSTRACT

Despite political change over the past 25 years in Britain there has been an unprecedented national policy focus on the social determinants of health and population-based approaches to prevent chronic disease. Yet, policy impacts have been modest, inequalities endure and behavioural approaches continue to shape strategies promoting healthy lifestyles. Critical public health scholarship has conceptualised this lack of progress as a problem of 'lifestyle drift' within policy whereby 'upstream' social contributors to health inequalities are reconfigured 'downstream' as a matter of individual behaviour change. While the lifestyle drift concept is now well established there has been little empirical investigation into the social processes through which it is realised as policies are (re)formulated and implementation is localised. Addressing this gap we present empirical findings from an ethnography conducted in a deprived English neighbourhood in order to explore: (i) the local context in the process of lifestyle drift and; (ii) the social relations that reproduce (in)equities in the design and delivery of lifestyle interventions. Analysis demonstrates how and why 'precarious partnerships' between local service providers were significant in the process of 'citizen shift' whereby government responsibility for addressing inequity was decollectivised.


Subject(s)
Delivery of Health Care , Health Policy , Health Status Disparities , Life Style , Social Determinants of Health , Anthropology, Cultural , Exercise , Humans , Obesity , United Kingdom
10.
Health Place ; 45: 85-91, 2017 05.
Article in English | MEDLINE | ID: mdl-28319858

ABSTRACT

Health interventions commonly have adverse effects. Addressing these could significantly improve health outcomes. This paper addresses an adverse effect common in the promotion of health behaviours: exacerbation of health inequalities between low- and high-socioeconomic groups. Health behaviours - particularly, physical activity - are positioned within the context of social inequality and the inequitable spatial distribution of resources. Area-based health policy that targets deprived areas is assessed for its capacity to promote health behaviours without exacerbating inequality. Data are derived from a 16-month ethnography in a deprived English neighbourhood that was the target of area-based intervention that prioritised the promotion of physical activity. Findings provide evidence of adverse intervention effects that further disadvantaged the low-socioeconomic population. Analysis demonstrates how this was ultimately the outcome of localised policy drifting away from initial commitments to equitable service access. These findings increase understanding of the processes through which adverse intervention effects arise and how they can be mitigated.


Subject(s)
Health Policy , Poverty Areas , Residence Characteristics , Socioeconomic Factors , Anthropology, Cultural , England/epidemiology , Exercise , Health Promotion/methods , Humans
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