Evidence-based practice and management-by-knowledge of disability care: rigid constraint or fluid support?

Background: Although increasingly accepted in some corners of social work, critics have claimed that evidence-based practice (EBP) methodologies run contrary to local care practices and result in an EBP straitjacket and epistemic injustice. These are serious concerns, especially in relation to already marginalised clients.Aims and objectives: Against the backdrop of criticism against EBP, this study explores the ramifications of the Swedish state-governed knowledge infrastructure, ‘management-by-knowledge’, for social care practices at two care units for persons with intellectual disabilities.Methods: Data generated from ethnographic observations and interviews were analysed by applying a conceptual framework of epistemic injustice; also analysed were national, regional and local knowledge products within management-by-knowledge related to two daily activity (DA) units at a social care provider in Sweden.Findings: In this particular case of disability care, no obvious risks of epistemic injustice were discovered in key knowledge practices of management-by-knowledge. Central methodologies of national agencies did include perspectives from social workers and clients, as did regional infrastructures. Locally, there were structures in place that focused on creating a dynamic interplay between knowledge coming from various forms of evidence, including social workers’ and clients’ own knowledge and experience.Discussion and conclusions: Far from being a straitjacket, in the case studied management-by-knowledge may be understood as offering fluid support. Efforts which aim at improving care for people with disabilities might benefit from organisational support structures that enable dynamic interactions between external knowledge and local practices.<br />Key messages<br /><ul><li>Examining one case of disability care in Sweden, both social workers’ and clients’ experiences were included in EBP infrastructures.</li><br /><li>In this study, Swedish EBP infrastructures functioned more like fluid support than a straitjacket.</li><br /><li>Organisational structures that combine different knowledge sources at service providers can minimise the risk of epistemic injustice within social care.</li></ul>

How did UK policymaking in the COVID-19 response use science? Evidence from scientific advisers

Background: Responses to COVID-19 have invested heavily in science. How this science was used is therefore important. Our work extends existing knowledge on the use of science in the pandemic by capturing scientific advisers’ experiences in real time.Aims and objectives: Our aim was to present generalisable messages on key qualifications or difficulties involved in speaking of ‘following the science’.Methods: Ninety-three interviews with UK scientific advisors and government officials captured their activities and perceptions during the pandemic in real time. We also examined Parliamentary Select Committee transcripts and government documents. This material was analysed for thematic content.Findings and discussion: (1) Many scientists sought guidance from policymakers about their goals, yet the COVID-19 response demonstrated the absence of a clear steer, and a tendency to change course quickly; (2) many scientists did not want to offer policy advice, but rather to provide evidence; and (3) a range of knowledge informed the UK’s pandemic response: we examine which kinds were privileged, and demonstrate the absence of clarity on how government synthesised the different forms of evidence being used.Conclusions: Understanding the reasons for a lack of clarity about policy goals would help us better understand the use of science in policy. Realisation that policy goals sometimes alter rapidly would help us better understand the logistics of scientific advice. Many scientists want their evidence to inform policy rather than determine the options selected. Since the process by which evidence leads to decisions is obscure, policy cannot be said to be evidence-based.<br />Key messages<br /><ul><li>Scientific advisors need to know policy goals, but these can be obscure and changeable.</li><br /><li>Many scientists want their evidence to inform policy rather than determine the policy selected.</li><br /><li>Evidence feeds into decisions in obscure ways, so policy cannot be said to be evidence-based.</li><br /><li>‘Evidence-informed’ policy is a more feasible aim than ‘evidence-based’ policy.</li></ul>

Ignoring evidence, producing inequities: public policies, disability and the case of Kaiowá and Guarani Indigenous children with disabilities in Brazil

Backround: An inter-institutional task force was brought together in 2018 to evaluate the irregular institutionalisation of Guarani and Kaiowá Indigenous children with disabilities in Dourados, in central-western Brazil.Aims and objectives: We draw on this case study to undertake a ‘situational analysis’ on the existence/absence and the use/non-use of evidence in the evaluation of public policies regarding Indigenous children with disabilities. By critically analysing concrete practices in the context of multilevel intersectoral dialogue and joint action of state bodies and civil society, we aim to highlight the effective and potential gains from using Culturally Appropriate Evidence (CAE) at the intersection of policies on children, Indigenous peoples and people with disabilities.Methods: We used a case study approach to analyse the precedents, development and ramifications of the task force, examine the legal framework regulating the rights of Indigenous children with disabilities, and describe the process of institutionalisation of Indigenous children in the Dourados region in the first two decades of the 21st century.Findings: We identified that inter-institutional and intersectoral collaboration enhances the development of CAE and the instrumentalisation of intersectoral alternatives.Discussion and conclusions: Although entrenched institutional bureaucratic culture, and the absence of mechanisms for participation and consultation with Indigenous peoples, can create obstacles to the formulation and use of these kinds of evidence in public policies, the production of evidence through the articulated and collaborative effort of agents can offer, when there are political conditions for it, the necessary conditions to develop culturally appropriate solutions for complex scenarios.<br />Key messages<br /><ul><li>The participation of policy beneficiaries is a necessary condition for the production of culturally qualified evidence;</li><br /><li>Institutional racism is an obstacle to the formulation and implementation of public policies based on culturally appropriate evidence;</li><br /><li>Intersector and inter-institutional links help to improve public service delivery and public policy implementation.</li></ul>

The many faces of disability in evidence for policy and practice: embracing complexity

Background: This special issue examines the relationship between disability, evidence, and policy.Key points: Several themes cut across the included papers. Despite the development of models of disability that recognise its socially constructed nature, dis/ableism impedes the involvement of people with disability in evidence production and use. The resultant incomplete representations of disability are biased towards its deproblematisation. Existing data often homogenise the heterogeneous. Functioning and impairment categories are used for surveys, research recruitment and policy enactments, that exclude many. Existing data may crudely evidence some systematic inequalities, but the successful and appropriate development and enactment of disability policies requires more contextual data. Categories and labels drawn from a deficit model affect social constructions of identity, and have been used socially and politically to justify the disenfranchisement of people with disability. Well rehearsed within welfare systems, this results in disempowered and devalued objects of policy, and, as described in one Brazilian paper, the systematic breakup of indigenous families. Several studies show the dangers of policy developed without evidence and impact assessments from and with the intended beneficiaries.Conclusions and implications: There is a need to mitigate barriers to inclusive participation, to enable people with disability to collaborate as equals with other policy actors. The combined application of different policy models and ontologies, currently in tension, might better harness their respective strengths and encourage greater transparency and deliberation regarding the flaws inherent in each. Learning should be shared across minority groups.

Understanding knowledge brokerage and its transformative potential: a Bourdieusian perspective

Background: Knowledge brokering is promoted as a means of enabling exchange between fields and closer collaboration across institutional boundaries. Yet examples of its success in fostering collaboration and reconfiguring boundaries remain few.Aims and objectives: We consider the introduction of a dedicated knowledge-brokering role in a partnership across healthcare research and practice, with a view to examining the interaction between knowledge brokers’ location and attributes and the characteristics of the fields across which they work.Methods: We use qualitative data from a four-year ethnographic study, including observations, interviews, focus groups, reflective diaries and other documentary sources. Our analysis draws on Pierre Bourdieu’s conceptual framework.Findings: In efforts to transform the boundaries between related but disjointed fields, a feature posited as advantageous – knowledge brokers’ liminality – may in practice work to their disadvantage. An unequal partnership between two fields, where the capitals (the resources, relationships, markers of prestige and forms of knowledge) valued in one are privileged over the other, left knowledge brokers without a prior affiliation to either field adrift between the two.Discussion and conclusions: Lacking legitimacy to act across fields and bridge the gap between them, knowledge brokers are likely to seek to develop their skills on one side of the boundary, focusing on more limited and conservative activities, rather than advance the value of a distinctive array of capitals in mediating between fields. We identify implications for the construction and deployment of knowledge-brokering interventions towards collaborative objectives.<br />Key messages<br /><ul><li>Knowledge brokers are vaunted as a means of translating knowledge and removing barriers between fields;</li><br /><li>Their position ‘in between’ fields is important, but their influence in those fields may be limited;</li><br /><li>Lacking the resources and relationships to work across fields, they may align with only one;</li><br /><li>Both the structure of fields and the prior knowledge and habitus of brokers will influence knowledge brokerage’s success.</li></ul>

Why is lived experience important for market stewardship? A proposed framework for why and how lived experience should be included in stewarding disability markets

Background: Many countries use market forces to drive reform across disability supports and services. Over the last few decades, many countries have individualised budgets and devolved these to people with disability, so that they can purchase their own choice of supports from an available market of services.Key points for discussion: Such individualised, market-based schemes aim to extend choice and control to people with disability, but this is only achievable if the market operates effectively. Market stewardship has therefore become an important function of government in guiding markets and ensuring they operate effectively.The type of evidence that governments tend to draw on in market stewardship is typically limited to inputs and outputs and has less insight into the outcomes services do or do not achieve. While this is a typical approach to market stewardship, we argue it is problematic and that a greater focus on outcomes is necessary.Conclusions and implications: To include a focus on outcomes, we argue that market stewards need to take account of the lived experience of people with disability. We present a framework for doing this, drawing on precedents where people with disability have contributed lived experience evidence within other policy, research, knowledge production and advocacy contexts.With the lived experience evidence of people with disability included, market stewardship will be better able to take account of outcomes as they play out in the lives of those using the market and, ultimately, achieve greater choice and control for people with disability.<br />Key messages<br /><ul><li>Market stewardship is key to guiding quasi-markets, including in the disability sector;</li><br /><li>Evidence guiding market stewardship is often about inputs and outputs only;</li><br /><li>It would be beneficial to also include lived experience evidence from people with disability;</li><br /><li>We propose a framework for the inclusion of lived experience evidence in market stewardship.</li></ul>

Impact and paybacks of biomedical research findings in Malaysia 2005–2015

Background: Impact in research encompasses health, economic, and cultural benefits beyond adding to the knowledge base. Funders are under immense pressure to be accountable for the paybacks from funded research.Aims and objectives: The aim of this study was to look into the impact of funded biomedical research between the years 2005 and 2015 in Malaysia from the aspects of knowledge production, research targeting and capacity building, as well as health system policy and decision making.Methods: This study employed a convergent parallel mixed-methods research design. Biomedical projects related to breast cancer, coronary heart disease, and dengue, funded by the Ministry of Health (MOH), Ministry of Higher Education (MOHE), and Ministry of Science, Technology, and Innovation (MOSTI) between the years 2005 and 2015, were included.Findings: From the questionnaire responses (n=58), on average each funded project managed to produce two outputs and one higher degree student. More than half (61.4%) of the funded projects led to subsequent future research. However, low citations in systematic reviews (10.3%), health policies (6.9%), and clinical practice guidelines (5.2%) were reported. In-depth interviews with the key opinion leaders also saw that most of the local research findings were found to be irrelevant to be adopted into policies by the policymakers.Discussion and conclusions: Paybacks on knowledge production as well as research targeting and capacity building had been achieved, but impact on health system policy and decision making had not been well attained, due to the lack of relevant research findings needed by the policymakers.<br />Key messages<br /><ul><li>Payback on knowledge production was achieved, as there had been a lot of new knowledge generated as captured in academic publications, conference proceedings, policy briefs, technical reports, and research highlights, which is important to advance the frontiers of knowledge.</li><br /><li>Payback on research targeting was achieved, with the current research leading to future study with identification of the knowledge gap and generation of new ideas for new research.</li><br /><li>Payback on capacity building was achieved with the training of researchers, building up research capacity and competencies, production of MSc and PhD graduates, promotion of lecturers, and development of new partnerships and networks.</li><br /><li>Impact on health system policy and decision making was not well attained. There had been a lack of relevant research data and findings being incorporated into policymaking, due to the basic and fundamental nature of most of the funded biomedical research in Malaysia.</li></ul>