Addressing the global challenges of multimorbidity – lessons from South Africa

Cite: The Academy of Medical Sciences, (2016). Addressing the global challenges of multimorbidity – lessons from South Africa. [Online] Available at: http://hdl.handle.net/20.500.11911/28The main objective of this workshop was to consider the burden of multimorbidity in South Africa and the UK, and ask how we can achieve a more coherent and consistent approach to defining, researching, and addressing multimorbidity. The workshop brought together experts and evidence from South Africa, the UK and other countries on the prevalence, burden, and determinants of multimorbidity. The aims of the workshop were as follows: • Identify gaps in our knowledge on the basis of the available evidence and identify the associated research priorities required to address them. • Consider how health systems in both the UK and South Africa are currently dealing with multimorbidity, and in particular discuss the key challenges and the costs and financing issues associated with multimorbidity – particularly in light of efforts to achieve universal health care. • Consider lessons that can be learned by each country from the other. • Ask how we can achieve a more coherent and consistent approach to defining, researching, and addressing multimorbidityUK Government’s Global Challenges Research Fun

Improving the prevention and management of multimorbidity in sub-Saharan Africa

Cite: Academy of Medical Sciences (UK) and Academy of Science of South Africa (ASSAf), (2020). Improving the prevention and management of multimorbidity in sub-Saharan Africa. [Available online] http://hdl.handle.net/20.500.11911/139Having two or more long-term conditions at the same time, known as multimorbidity, is a growing challenge globally. This workshop focused on finding out what is known about the extent and nature of multimorbidity and appropriate responses to it, where further research would be valuable and highlighted that addressing multimorbidity in a range of sub-Saharan countries will be heavily dependent on local contextual factors. On 5–6 September 2019, researchers from across sub-Saharan Africa gathered in Sandton, Johannesburg, South Africa, to discuss the specific challenges in addressing multimorbidity in the region and the role that research could play. In particular, the ways research could improve understanding of multimorbidity in sub-Saharan Africa and identify the most effective ways to prevent and treat it. The meeting was jointly organised by the Academy of Medical Sciences, UK, and the Academy of Science of South Africa. The meeting programme was developed by a steering committee chaired by Professor Alan Silman FMedSci, University of Oxford, UK, and Professor Karen Hofman MASSAf, University of the Witwatersrand, South Africa, and included researchers from multiple sub-Saharan African countries (Annex One). This report provides a summary of the key themes to emerge from the meeting, as well as a set of high-level multimorbidity research priorities for the region. It reflects the views expressed by participants at the meeting and does not necessarily represent the views of all participants, all members of the steering committee, the Academy of Medical Sciences, or the Academy of Science of South Africa.UK Academy of Medical Science

Advancing multisectoral and life-course approaches in mental health research

10 pagesAlthough there is some evidence of increasing investment, mental health services are a neglected aspect of healthcare in sub-Saharan Africa.* However, the COVID-19 pandemic – and control measures associated with it – has shone the spotlight on mental health challenges and their human, social and economic costs. The impact of the pandemic has highlighted the importance of the biopsychosocial model of mental health, which recognises that mental wellbeing is affected by the interplay between ‘internal’ biological and psychological factors and ‘external’ social, political, and environmental influences. For the latter, the social determinants of mental health concept highlights how a wide range of external factors across several domains have a critical impact on mental wellbeing. Interventions targeting social determinants or structural factors have the advantage of potentially delivering benefits to large numbers for prolonged periods. In November 2022, the UK Academy of Medical Sciences and the Academy of Sciences of South Africa jointly organised a workshop to explore ways to advance multisectoral and life-course approaches in mental health research in sub-Saharan Africa. In breakout groups, workshop participants discussed successful examples of mental health research in sub-Saharan Africa, similarities and differences across countries, and how greater collaboration could advance multisectoral and life-course approaches to mental health research. These discussions highlighted a range of key themes: • Strengthening and diversifying data sources: Participants suggested that, in some settings, additional data are needed on disease burdens, priority populations and social determinants of mental health which could be used to support advocacy, target action and guide the development of new interventions. As well as epidemiological data, long-term longitudinal data could provide insights into pathways to mental health impact and identify potential points of intervention. • Developing consistent, locally defined, standardised and appropriate metrics for valued outcomes: Delegates stressed the importance of consistency in approaches across studies, and use of contextually validated and standardised measures, to ensure quality and facilitate comparisons and data pooling. These measures need to be culturally relevant and meaningful to people with lived experience, capturing broader social and economic outcomes alongside clinical improvement. It is also important to capture qualitative as well as quantitative inputs through these metrics. To promote a life-course perspective, measures need to be suitable for use beyond the traditional focus on working-age adults. • Promoting translational development: The need for additional research across the translational spectrum was highlighted, including more evaluation of ‘grass-roots’ initiatives, additional confirmatory and larger-scale studies following promising pilot studies, and implementation/operational research to accelerate introduction and scale-up of evidence-based policies and interventions. It was argued that interventions should prioritise integration with existing health system and community platforms, and adopt people-centred approaches. • Strengthening partnerships to achieve the above: Participants identified interdisciplinary and multisectoral collaborations as critical to progress, potentially supported by an integrated conceptual framework to facilitate cross-sectoral interdisciplinary research programmes and intervention development. Strengthened collaboration within the region and internationally, through equitable international partnerships with a commitment to capacity-building, was seen as fundamental. Participants also stressed the need for a systems-based approach and engagement with all relevant actors, including members of the public, the informal health sector (such as traditional and faith healers) and the private sector where appropriate. • Building relationships with people with lived experience to ensure input at all stages: Delegates highlighted the critical importance of engaging with people with lived experience, to provide opportunities for meaningful inputs at all stages of research, including prioritisation of research questions and co-creation and delivery of interventions. • Optimising the mental healthcare workforce: Strengthening and building workforce capacity in mental health were seen as high priorities. Mental health specialists are few in number in the region and further research on strategies such as task-shifting, and scaling up of proven task-shifting interventions, could help to address large treatment gaps. Participants also suggested that there is a need to promote skills development to support greater service and multi-sectoral integration, task shifting, and mental health awareness across relevant sectors. • Supporting advocacy to promote the above: Delegates identified the need for the research community to engage with policymakers to understand their needs and provide evidence-based inputs, to leverage the mainstream media to translate messages for more general audiences, and to work with people with lived experience to achieve co-ordinated and more effective advocacy. By strengthening ties – within Africa and internationally – the mental health research community in the region will be better placed to share knowledge and experience, develop joint and multicentre studies, and raise the profile of mental health research among politicians and policymakers. In doing so, they can help to close the mental health care gap and build a field with the capacity to enhance mental health for all and at all stages of life.UK Academy of Medical Sciences (AMS); Janssen Pharmaceutica (Pty) Lt

The Social Licence for Research:Why care.data Ran Into Trouble

In this article we draw on the concept of a social licence to explain public concern at the introduction of care.data, a recent English initiative designed to extract data from primary care medical records for commissioning and other purposes, including research. The concept of a social licence describes how the expectations of society regarding some activities may go beyond compliance with the requirements of formal regulation; those who do not fulfil the conditions for the social licence (even if formally compliant) may experience ongoing challenge and contestation. Previous work suggests that people's cooperation with specific research studies depends on their perceptions that their participation is voluntary and is governed by values of reciprocity, non-exploitation and service of the public good. When these conditions are not seen to obtain, threats to the social licence for research may emerge. We propose that care.data failed to adequately secure a social licence because of: (i) defects in the warrants of trust provided for care.data, (ii) the implied rupture in the traditional role, expectations and duties of general practitioners, and (iii) uncertainty about the status of care.data as a public good. The concept of a social licence may be useful in explaining the specifics of care.data, and also in reinforcing the more general lesson for policy-makers that legal authority does not necessarily command social legitimacy

The impact of consent on observational research: a comparison of outcomes from consenters and non consenters to an observational study

Background Public health benefits from research often rely on the use of data from personal medical records. When neither patient consent nor anonymisation is possible, the case for accessing such records for research purposes depends on an assessment of the probabilities of public benefit and individual harm. Methods In the late 1990s, we carried out an observational study which compared the care given to affluent and deprived women with breast cancer. Patient consent was not required at that time for review of medical records, but was obtained later in the process prior to participation in the questionnaire study. We have re-analysed our original results to compare the whole sample with those who later provided consent. Results Two important findings emerged from the re-analysis of our data which if presented initially would have resulted in insufficient and inaccurate reporting. Firstly, the reduced dataset contains no information about women presenting with locally advanced or metastatic cancer and we would have been unable to demonstrate one of our initial key findings: namely a larger number of such women in the deprived group. Secondly, our re-analysis of the consented women shows that significantly more women from deprived areas (51 v 31%, p = 0.018) received radiotherapy compared to women from more affluent areas. Previously published data from the entire sample demonstrated no difference in radiotherapy treatment between the affluent and deprived groups. Conclusion The risk benefit assessment made regarding the use of medical records without consent should include the benefits of obtaining research evidence based on 100% of the population and the possibility of inappropriate or insufficient findings if research is confined to consented populations

Understanding the care.data conundrum: new information flows for economic growth

The analysis of data from electronic health records aspires to facilitate healthcare efficiencies and biomedical innovation. There are also ethical, legal and social implications from the handling of sensitive patient information. The paper explores the concerns, expectations and implications of the National Health Service (NHS) England care.data programme: a national data sharing initiative of linked electronic health records for healthcare and other research purposes. Using Nissenbaum’s contextual integrity of privacy framework through a critical science and technology studies (STS) lens, it examines the way technologies and policies are developed to promote sustainability, governance and economic growth as the de facto social values, while reducing privacy to an individualistic preference. The state, acting as a new, central data broker reappropriates public ownership rights and establishes those information flows and transmission principles that facilitate the assetisation of NHS datasets for the knowledge economy. Various actors and processes from other contexts attempt to erode the public healthcare sector and privilege new information recipients. However, such data sharing initiatives in healthcare will be resisted if we continue to focus only on the monetary and scientific values of these datasets and keep ignoring their equally important social and ethical values

Developing and evaluating complex interventions: the new Medical Research Council guidance

<p><i>Evaluating complex interventions is complicated. The Medical Research Council's evaluation framework (2000) brought welcome clarity to the task. Now the council has updated its guidance</i></p> <p>Complex interventions are widely used in the health service, in public health practice, and in areas of social policy that have important health consequences, such as education, transport, and housing. They present various problems for evaluators, in addition to the practical and methodological difficulties that any successful evaluation must overcome. In 2000, the Medical Research Council (MRC) published a framework<sup>1</sup> to help researchers and research funders to recognise and adopt appropriate methods. The framework has been highly influential, and the accompanying BMJ paper is widely cited.<sup>2</sup> However, much valuable experience has since accumulated of both conventional and more innovative methods. This has now been incorporated in comprehensively revised and updated guidance recently released by the MRC (<a href="www.mrc.ac.uk/complexinterventionsguidance">www.mrc.ac.uk/complexinterventionsguidance</a>). In this article we summarise the issues that prompted the revision and the key messages of the new guidance. </p&gt