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Case Studies

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The BBC’s The Green Planet Programme: Analysis of Social Impact

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Wellbeing impacts of works disruptions and service interruptions

In preparation for their input to the latest round of price control discussion with Ofgem, gas supply company SGN sought research on new ways of valuing the firm’s impact on their consumers...

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The UK Government committed to a major road project to improve the A303 to improve connectivity to the south-west of England, while reducing the impact of the road on the Stonehenge World Heritage Site...

The Value of Local Place: A study on the value of everyday heritage

When Historic England looked to develop a set of monetary values for the everyday heritage sites in their local area using metrics and methods consistent with HM Treasury Green Book evaluation guidance, they commissioned Simetrica-Jacobs to deliver the project...

The Economic Value of Culture: A Benefit Transfer Study

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The Cultural and Heritage Capital Framework: A major contribution of new guidance, evidence and research on the economic value of culture and heritage

Simetrica were commissioned by Arts Council England, Historic England, and the Department of Digital, Culture, Media and Sport to value a series of arts, culture, and heritage institutions. This work forms part of best-practice techniques for the sector...

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Siemens Science Technology Engineering and Maths (STEM) Educational Program

Simetrica-Jacobs were commissioned by Siemens to design an evaluation programme for the range of interventions that Siemens fund to encourage school students – in particular female students – to engage more in STEM subjects and to continue these studies to A-level and university...

Measuring the impact of tackling reoffending in Merseyside

Everton commissioned Simetrica-Jacobs to assess and value the programmes outcomes using the Sport Value Bank tool, making use of data on three key target outcomes...

Measuring Impact by Design, Impact Canada

Impact Canada approached Simetrica-Jacobs to develop and write guidance on impact measurement for use by the Canadian Government...

Evaluation of impact of arts and reminiscence interventions on people with dementia and their carers

Age Exchange wanted to evaluate the impact of their RADIQL programme, a creative arts intervention that works with those with dementia and seeks to reduce levels of isolation, loneliness, unhappiness and depression...

Evaluation of DFiD-funded educational programmes in Ethiopia

Simetrica-Jacobs was commissioned to conduct a five-year qualitative and quantitative evaluation of a major girls’ educational project in Ethiopia, provided by the UK...

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Developing a Social Value Framework for a Leading Property Developer

Simetrica-Jacobs was commissioned by leading international property and infrastructure group Lendlease to develop a social value framework for use by the multinational company to consistently measure social value creation across construction projects globally...

City Centre Transformation Strategy

The Edinburgh City Centre Transformation project aims to significantly overhaul the operation, quality and experience of Edinburgh’s City Centre streets, public spaces, amenity of access and movement, in a way that plans and sets the scene for future developments of the city up to 2050...

A Value Bank for the Housing Sector

Simetrica-Jacobs was commissioned by Redrow plc, a leading housing developer in the UK, to demonstrate the social value of Redrow housing developments...

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An Exploratory Multi-Case Study of the Health and Wellbeing Needs, Relationships and Experiences of Health and Social Care Service Users and the People who Support them at Home

Affiliations.

• 1 Bon Accord Care, Inspire Building, Beach Boulevard, Aberdeen, AB24 5HP, GB.
• 2 Robert Gordon University, School of Nursing & Midwifery, Garthdee Road, Aberdeen, United Kingdom, AB10 7QE, GB.
• 3 University of Highlands and Islands, Institute of Health Research and Innovation, Centre for Health Science, Old Perth Road, Inverness, United Kingdom, IV2 3JH, GB.
• 4 The Queens Nursing Institute Scotland, 31 Castle Terrance, Edinburgh, Scotland, United Kingdom, AH1 2EL, GB.
• 5 The University of Limerick, Department of Nursing and Midwifery, Limerick, Ireland, V94 T9PX, GB.
• PMID: 36845871
• PMCID: PMC9951626
• DOI: 10.5334/ijic.7003

Introduction: International policies and legislation set a precedence of person-centred sustainable integrated Health and Social Care (HSC) that meets the health and wellbeing needs of service users through improved experiences. However, current research focuses on service models, with fewer studies investigating experiences and needs.

Methods: This qualitative multi-case [n = 7] study was co-designed with key stakeholders and aimed to explore experiences and needs of people who access and provide HSC at home. Data were collected in a regional area of Scotland (UK) via single [n = 10] or dyad [n = 4] semi-structured interviews with service users [n = 6], informal carers [n = 5] and HSC staff [n = 7] and synthesised using Interpretive Thematic Analysis.

Findings: Interpersonal connections and supportive relationships were instrumental in helping all participant groups feel able to cope with their changing HSC needs and roles. They promoted reassurance, information sharing and reduced anxiety; when they were lacking, it negatively impacted upon experiences of HSC.

Discussion: Promoting inter-personal connections that encourage supportive relationships between people who access and provide HSC and their communities, could promote person-centred Relationship-based care and improve HSC experiences.

Conclusions: This study identifies indicators for improved HSC, advocating co-produced community-driven services to meet the self-defined needs of those who access and provide care.

Keywords: co-production; community or communities; health and wellbeing needs; integrated health and social care; people-centred care; relationships or relationship-based care.

Copyright: © 2023 The Author(s).

• Open access
• Published: 27 June 2011

The case study approach

• Sarah Crowe 1 ,
• Kathrin Cresswell 2 ,
• Ann Robertson 2 ,
• Guro Huby 3 ,
• Anthony Avery 1 &
• Aziz Sheikh 2  

BMC Medical Research Methodology volume  11 , Article number:  100 ( 2011 ) Cite this article

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The case study approach allows in-depth, multi-faceted explorations of complex issues in their real-life settings. The value of the case study approach is well recognised in the fields of business, law and policy, but somewhat less so in health services research. Based on our experiences of conducting several health-related case studies, we reflect on the different types of case study design, the specific research questions this approach can help answer, the data sources that tend to be used, and the particular advantages and disadvantages of employing this methodological approach. The paper concludes with key pointers to aid those designing and appraising proposals for conducting case study research, and a checklist to help readers assess the quality of case study reports.

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Introduction

The case study approach is particularly useful to employ when there is a need to obtain an in-depth appreciation of an issue, event or phenomenon of interest, in its natural real-life context. Our aim in writing this piece is to provide insights into when to consider employing this approach and an overview of key methodological considerations in relation to the design, planning, analysis, interpretation and reporting of case studies.

The illustrative 'grand round', 'case report' and 'case series' have a long tradition in clinical practice and research. Presenting detailed critiques, typically of one or more patients, aims to provide insights into aspects of the clinical case and, in doing so, illustrate broader lessons that may be learnt. In research, the conceptually-related case study approach can be used, for example, to describe in detail a patient's episode of care, explore professional attitudes to and experiences of a new policy initiative or service development or more generally to 'investigate contemporary phenomena within its real-life context' [ 1 ]. Based on our experiences of conducting a range of case studies, we reflect on when to consider using this approach, discuss the key steps involved and illustrate, with examples, some of the practical challenges of attaining an in-depth understanding of a 'case' as an integrated whole. In keeping with previously published work, we acknowledge the importance of theory to underpin the design, selection, conduct and interpretation of case studies[ 2 ]. In so doing, we make passing reference to the different epistemological approaches used in case study research by key theoreticians and methodologists in this field of enquiry.

This paper is structured around the following main questions: What is a case study? What are case studies used for? How are case studies conducted? What are the potential pitfalls and how can these be avoided? We draw in particular on four of our own recently published examples of case studies (see Tables 1 , 2 , 3 and 4 ) and those of others to illustrate our discussion[ 3 – 7 ].

What is a case study?

A case study is a research approach that is used to generate an in-depth, multi-faceted understanding of a complex issue in its real-life context. It is an established research design that is used extensively in a wide variety of disciplines, particularly in the social sciences. A case study can be defined in a variety of ways (Table 5 ), the central tenet being the need to explore an event or phenomenon in depth and in its natural context. It is for this reason sometimes referred to as a "naturalistic" design; this is in contrast to an "experimental" design (such as a randomised controlled trial) in which the investigator seeks to exert control over and manipulate the variable(s) of interest.

Stake's work has been particularly influential in defining the case study approach to scientific enquiry. He has helpfully characterised three main types of case study: intrinsic , instrumental and collective [ 8 ]. An intrinsic case study is typically undertaken to learn about a unique phenomenon. The researcher should define the uniqueness of the phenomenon, which distinguishes it from all others. In contrast, the instrumental case study uses a particular case (some of which may be better than others) to gain a broader appreciation of an issue or phenomenon. The collective case study involves studying multiple cases simultaneously or sequentially in an attempt to generate a still broader appreciation of a particular issue.

These are however not necessarily mutually exclusive categories. In the first of our examples (Table 1 ), we undertook an intrinsic case study to investigate the issue of recruitment of minority ethnic people into the specific context of asthma research studies, but it developed into a instrumental case study through seeking to understand the issue of recruitment of these marginalised populations more generally, generating a number of the findings that are potentially transferable to other disease contexts[ 3 ]. In contrast, the other three examples (see Tables 2 , 3 and 4 ) employed collective case study designs to study the introduction of workforce reconfiguration in primary care, the implementation of electronic health records into hospitals, and to understand the ways in which healthcare students learn about patient safety considerations[ 4 – 6 ]. Although our study focusing on the introduction of General Practitioners with Specialist Interests (Table 2 ) was explicitly collective in design (four contrasting primary care organisations were studied), is was also instrumental in that this particular professional group was studied as an exemplar of the more general phenomenon of workforce redesign[ 4 ].

What are case studies used for?

According to Yin, case studies can be used to explain, describe or explore events or phenomena in the everyday contexts in which they occur[ 1 ]. These can, for example, help to understand and explain causal links and pathways resulting from a new policy initiative or service development (see Tables 2 and 3 , for example)[ 1 ]. In contrast to experimental designs, which seek to test a specific hypothesis through deliberately manipulating the environment (like, for example, in a randomised controlled trial giving a new drug to randomly selected individuals and then comparing outcomes with controls),[ 9 ] the case study approach lends itself well to capturing information on more explanatory ' how ', 'what' and ' why ' questions, such as ' how is the intervention being implemented and received on the ground?'. The case study approach can offer additional insights into what gaps exist in its delivery or why one implementation strategy might be chosen over another. This in turn can help develop or refine theory, as shown in our study of the teaching of patient safety in undergraduate curricula (Table 4 )[ 6 , 10 ]. Key questions to consider when selecting the most appropriate study design are whether it is desirable or indeed possible to undertake a formal experimental investigation in which individuals and/or organisations are allocated to an intervention or control arm? Or whether the wish is to obtain a more naturalistic understanding of an issue? The former is ideally studied using a controlled experimental design, whereas the latter is more appropriately studied using a case study design.

Case studies may be approached in different ways depending on the epistemological standpoint of the researcher, that is, whether they take a critical (questioning one's own and others' assumptions), interpretivist (trying to understand individual and shared social meanings) or positivist approach (orientating towards the criteria of natural sciences, such as focusing on generalisability considerations) (Table 6 ). Whilst such a schema can be conceptually helpful, it may be appropriate to draw on more than one approach in any case study, particularly in the context of conducting health services research. Doolin has, for example, noted that in the context of undertaking interpretative case studies, researchers can usefully draw on a critical, reflective perspective which seeks to take into account the wider social and political environment that has shaped the case[ 11 ].

How are case studies conducted?

Here, we focus on the main stages of research activity when planning and undertaking a case study; the crucial stages are: defining the case; selecting the case(s); collecting and analysing the data; interpreting data; and reporting the findings.

Defining the case

Carefully formulated research question(s), informed by the existing literature and a prior appreciation of the theoretical issues and setting(s), are all important in appropriately and succinctly defining the case[ 8 , 12 ]. Crucially, each case should have a pre-defined boundary which clarifies the nature and time period covered by the case study (i.e. its scope, beginning and end), the relevant social group, organisation or geographical area of interest to the investigator, the types of evidence to be collected, and the priorities for data collection and analysis (see Table 7 )[ 1 ]. A theory driven approach to defining the case may help generate knowledge that is potentially transferable to a range of clinical contexts and behaviours; using theory is also likely to result in a more informed appreciation of, for example, how and why interventions have succeeded or failed[ 13 ].

For example, in our evaluation of the introduction of electronic health records in English hospitals (Table 3 ), we defined our cases as the NHS Trusts that were receiving the new technology[ 5 ]. Our focus was on how the technology was being implemented. However, if the primary research interest had been on the social and organisational dimensions of implementation, we might have defined our case differently as a grouping of healthcare professionals (e.g. doctors and/or nurses). The precise beginning and end of the case may however prove difficult to define. Pursuing this same example, when does the process of implementation and adoption of an electronic health record system really begin or end? Such judgements will inevitably be influenced by a range of factors, including the research question, theory of interest, the scope and richness of the gathered data and the resources available to the research team.

Selecting the case(s)

The decision on how to select the case(s) to study is a very important one that merits some reflection. In an intrinsic case study, the case is selected on its own merits[ 8 ]. The case is selected not because it is representative of other cases, but because of its uniqueness, which is of genuine interest to the researchers. This was, for example, the case in our study of the recruitment of minority ethnic participants into asthma research (Table 1 ) as our earlier work had demonstrated the marginalisation of minority ethnic people with asthma, despite evidence of disproportionate asthma morbidity[ 14 , 15 ]. In another example of an intrinsic case study, Hellstrom et al.[ 16 ] studied an elderly married couple living with dementia to explore how dementia had impacted on their understanding of home, their everyday life and their relationships.

For an instrumental case study, selecting a "typical" case can work well[ 8 ]. In contrast to the intrinsic case study, the particular case which is chosen is of less importance than selecting a case that allows the researcher to investigate an issue or phenomenon. For example, in order to gain an understanding of doctors' responses to health policy initiatives, Som undertook an instrumental case study interviewing clinicians who had a range of responsibilities for clinical governance in one NHS acute hospital trust[ 17 ]. Sampling a "deviant" or "atypical" case may however prove even more informative, potentially enabling the researcher to identify causal processes, generate hypotheses and develop theory.

In collective or multiple case studies, a number of cases are carefully selected. This offers the advantage of allowing comparisons to be made across several cases and/or replication. Choosing a "typical" case may enable the findings to be generalised to theory (i.e. analytical generalisation) or to test theory by replicating the findings in a second or even a third case (i.e. replication logic)[ 1 ]. Yin suggests two or three literal replications (i.e. predicting similar results) if the theory is straightforward and five or more if the theory is more subtle. However, critics might argue that selecting 'cases' in this way is insufficiently reflexive and ill-suited to the complexities of contemporary healthcare organisations.

The selected case study site(s) should allow the research team access to the group of individuals, the organisation, the processes or whatever else constitutes the chosen unit of analysis for the study. Access is therefore a central consideration; the researcher needs to come to know the case study site(s) well and to work cooperatively with them. Selected cases need to be not only interesting but also hospitable to the inquiry [ 8 ] if they are to be informative and answer the research question(s). Case study sites may also be pre-selected for the researcher, with decisions being influenced by key stakeholders. For example, our selection of case study sites in the evaluation of the implementation and adoption of electronic health record systems (see Table 3 ) was heavily influenced by NHS Connecting for Health, the government agency that was responsible for overseeing the National Programme for Information Technology (NPfIT)[ 5 ]. This prominent stakeholder had already selected the NHS sites (through a competitive bidding process) to be early adopters of the electronic health record systems and had negotiated contracts that detailed the deployment timelines.

It is also important to consider in advance the likely burden and risks associated with participation for those who (or the site(s) which) comprise the case study. Of particular importance is the obligation for the researcher to think through the ethical implications of the study (e.g. the risk of inadvertently breaching anonymity or confidentiality) and to ensure that potential participants/participating sites are provided with sufficient information to make an informed choice about joining the study. The outcome of providing this information might be that the emotive burden associated with participation, or the organisational disruption associated with supporting the fieldwork, is considered so high that the individuals or sites decide against participation.

In our example of evaluating implementations of electronic health record systems, given the restricted number of early adopter sites available to us, we sought purposively to select a diverse range of implementation cases among those that were available[ 5 ]. We chose a mixture of teaching, non-teaching and Foundation Trust hospitals, and examples of each of the three electronic health record systems procured centrally by the NPfIT. At one recruited site, it quickly became apparent that access was problematic because of competing demands on that organisation. Recognising the importance of full access and co-operative working for generating rich data, the research team decided not to pursue work at that site and instead to focus on other recruited sites.

Collecting the data

In order to develop a thorough understanding of the case, the case study approach usually involves the collection of multiple sources of evidence, using a range of quantitative (e.g. questionnaires, audits and analysis of routinely collected healthcare data) and more commonly qualitative techniques (e.g. interviews, focus groups and observations). The use of multiple sources of data (data triangulation) has been advocated as a way of increasing the internal validity of a study (i.e. the extent to which the method is appropriate to answer the research question)[ 8 , 18 – 21 ]. An underlying assumption is that data collected in different ways should lead to similar conclusions, and approaching the same issue from different angles can help develop a holistic picture of the phenomenon (Table 2 )[ 4 ].

Brazier and colleagues used a mixed-methods case study approach to investigate the impact of a cancer care programme[ 22 ]. Here, quantitative measures were collected with questionnaires before, and five months after, the start of the intervention which did not yield any statistically significant results. Qualitative interviews with patients however helped provide an insight into potentially beneficial process-related aspects of the programme, such as greater, perceived patient involvement in care. The authors reported how this case study approach provided a number of contextual factors likely to influence the effectiveness of the intervention and which were not likely to have been obtained from quantitative methods alone.

In collective or multiple case studies, data collection needs to be flexible enough to allow a detailed description of each individual case to be developed (e.g. the nature of different cancer care programmes), before considering the emerging similarities and differences in cross-case comparisons (e.g. to explore why one programme is more effective than another). It is important that data sources from different cases are, where possible, broadly comparable for this purpose even though they may vary in nature and depth.

Analysing, interpreting and reporting case studies

Making sense and offering a coherent interpretation of the typically disparate sources of data (whether qualitative alone or together with quantitative) is far from straightforward. Repeated reviewing and sorting of the voluminous and detail-rich data are integral to the process of analysis. In collective case studies, it is helpful to analyse data relating to the individual component cases first, before making comparisons across cases. Attention needs to be paid to variations within each case and, where relevant, the relationship between different causes, effects and outcomes[ 23 ]. Data will need to be organised and coded to allow the key issues, both derived from the literature and emerging from the dataset, to be easily retrieved at a later stage. An initial coding frame can help capture these issues and can be applied systematically to the whole dataset with the aid of a qualitative data analysis software package.

The Framework approach is a practical approach, comprising of five stages (familiarisation; identifying a thematic framework; indexing; charting; mapping and interpretation) , to managing and analysing large datasets particularly if time is limited, as was the case in our study of recruitment of South Asians into asthma research (Table 1 )[ 3 , 24 ]. Theoretical frameworks may also play an important role in integrating different sources of data and examining emerging themes. For example, we drew on a socio-technical framework to help explain the connections between different elements - technology; people; and the organisational settings within which they worked - in our study of the introduction of electronic health record systems (Table 3 )[ 5 ]. Our study of patient safety in undergraduate curricula drew on an evaluation-based approach to design and analysis, which emphasised the importance of the academic, organisational and practice contexts through which students learn (Table 4 )[ 6 ].

Case study findings can have implications both for theory development and theory testing. They may establish, strengthen or weaken historical explanations of a case and, in certain circumstances, allow theoretical (as opposed to statistical) generalisation beyond the particular cases studied[ 12 ]. These theoretical lenses should not, however, constitute a strait-jacket and the cases should not be "forced to fit" the particular theoretical framework that is being employed.

When reporting findings, it is important to provide the reader with enough contextual information to understand the processes that were followed and how the conclusions were reached. In a collective case study, researchers may choose to present the findings from individual cases separately before amalgamating across cases. Care must be taken to ensure the anonymity of both case sites and individual participants (if agreed in advance) by allocating appropriate codes or withholding descriptors. In the example given in Table 3 , we decided against providing detailed information on the NHS sites and individual participants in order to avoid the risk of inadvertent disclosure of identities[ 5 , 25 ].

What are the potential pitfalls and how can these be avoided?

The case study approach is, as with all research, not without its limitations. When investigating the formal and informal ways undergraduate students learn about patient safety (Table 4 ), for example, we rapidly accumulated a large quantity of data. The volume of data, together with the time restrictions in place, impacted on the depth of analysis that was possible within the available resources. This highlights a more general point of the importance of avoiding the temptation to collect as much data as possible; adequate time also needs to be set aside for data analysis and interpretation of what are often highly complex datasets.

Case study research has sometimes been criticised for lacking scientific rigour and providing little basis for generalisation (i.e. producing findings that may be transferable to other settings)[ 1 ]. There are several ways to address these concerns, including: the use of theoretical sampling (i.e. drawing on a particular conceptual framework); respondent validation (i.e. participants checking emerging findings and the researcher's interpretation, and providing an opinion as to whether they feel these are accurate); and transparency throughout the research process (see Table 8 )[ 8 , 18 – 21 , 23 , 26 ]. Transparency can be achieved by describing in detail the steps involved in case selection, data collection, the reasons for the particular methods chosen, and the researcher's background and level of involvement (i.e. being explicit about how the researcher has influenced data collection and interpretation). Seeking potential, alternative explanations, and being explicit about how interpretations and conclusions were reached, help readers to judge the trustworthiness of the case study report. Stake provides a critique checklist for a case study report (Table 9 )[ 8 ].

Conclusions

The case study approach allows, amongst other things, critical events, interventions, policy developments and programme-based service reforms to be studied in detail in a real-life context. It should therefore be considered when an experimental design is either inappropriate to answer the research questions posed or impossible to undertake. Considering the frequency with which implementations of innovations are now taking place in healthcare settings and how well the case study approach lends itself to in-depth, complex health service research, we believe this approach should be more widely considered by researchers. Though inherently challenging, the research case study can, if carefully conceptualised and thoughtfully undertaken and reported, yield powerful insights into many important aspects of health and healthcare delivery.

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Acknowledgements

We are grateful to the participants and colleagues who contributed to the individual case studies that we have drawn on. This work received no direct funding, but it has been informed by projects funded by Asthma UK, the NHS Service Delivery Organisation, NHS Connecting for Health Evaluation Programme, and Patient Safety Research Portfolio. We would also like to thank the expert reviewers for their insightful and constructive feedback. Our thanks are also due to Dr. Allison Worth who commented on an earlier draft of this manuscript.

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Sarah Crowe & Anthony Avery

Centre for Population Health Sciences, The University of Edinburgh, Edinburgh, UK

Kathrin Cresswell, Ann Robertson & Aziz Sheikh

School of Health in Social Science, The University of Edinburgh, Edinburgh, UK

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Correspondence to Sarah Crowe .

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The authors declare that they have no competing interests.

Authors' contributions

AS conceived this article. SC, KC and AR wrote this paper with GH, AA and AS all commenting on various drafts. SC and AS are guarantors.

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Integrated care in practice: a case study of health and social care for adults considered to be at high risk of hospital admission

Integrated care is pursued globally as a strategy to manage health and social care resources more effectively. It offers the promise of meeting increasingly complex needs, particularly those of aging populations, in a person-centred, co-ordinated way that addresses fragmentation and improves quality.

However, policy to integrate health and social care in England has led to programmes which have had disappointing effects on reducing hospital admissions and costs. My concern with the...

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Integrated Health and Social Care in England: Ten Years On

Robin miller.

1 University of Birmingham, UK

Helen Dickinson

2 University of New South Wales, Australia

Introduction:

As part of major policy reforms begun in 2010, England introduced a wave of initiatives to encourage more integrated care between health and social care. These built on previous attempts which sought to achieve similar objectives through a focus on better partnership working. This article provides an overview and critical commentary on integrated care policy in England from 2010–2020 based on reviews by regulators, parliamentary committees and the national audit office.

Overview of Policy:

Integrated care became a priority through the work of the Future Forum, a group of leading stakeholders established due to concerns about greater competition in public health care. This led to a public statement of shared commitment to integrated care by national health and social care bodies. Early mechanisms included a pooled fund to achieve nationally set objectives, the creation of local authority led partnership boards, and high profile innovation programmes. Later in the 2010’s, new health led partnerships became more dominant vehicles to achieve integrated care at regional level.

Impact of Policy:

Despite progress within a few local areas, and reduction in delayed discharges from hospital the overall picture from national reviews was that expected improvements were not achieved. Emergency admissions to hospital continued to grow, patients within primary care reported being less involved in their care, and health inequalities worsened. The initial response to COVID-19 was health-centric contributing to outbreaks in care homes and inadequate supplies of protective personal equipment. The ability of leaders to look beyond their organisations’ interests was reported as vital for local progress. National government performance frameworks discouraged system based working and chronic underfunding of social care led to major capacity and workforce challenges.

Conclusion:

The experience of England suggests that greatest progress is made when integrated care focusses on tangible issues and when there is a clear understanding of how success will be measured. Even with considerable investment and intent progress should be expected to be slow and difficult. Layering of numerous policy initiatives provides confusion and can distract from the important work of relationship building. And ultimately, integrated care cannot by itself address major inadequacies in the underlying resources and structural inequalities.

Introduction

A decade ago we published a paper within this journal [ 1 ] exploring partnership working between English health and social care organisations, summarising the key approaches adopted and whether this had resulted in positive impacts [either for those delivering care or for people receiving it]. In this paper we explore the experience of the past decade following this initial paper to explore whether progress has been made and what this tells us about collaborative working in health and social care settings. As such, this paper provides insights for an audience interested in the specific English context, but also generates lessons about how to drive joined-up working and the pitfalls to avoid that are relevant for broader international learning of integrated care. It also starts to explore how key concepts and policy agendas may evolve over time in response to significant national and international challenges such as the financial crisis of 2008 or COVID-19 and how much continuity there can be, even with governments of very different political persuasions in office. To understand policy aspirations and the progress achieved, we draw on reports by relevant governmental bodies. This includes reviews by the regulator of health and social care (Care Quality Commission), the independent spending watchdog (National Audit Office), and scrutiny committees within parliament (Committee of Public Accounts and Health and Social Care Committee). These bodies draw on a range of sources including directly gathering the views of people with lived experience of health and care services and/or engaging with their representative bodies. The authors are academics who have undertaken independent research of integrated care policy reforms in England over two decades.

Partnership working in health and social care

In exploring whether we have seen significant progress over the past decade we first need to revisit the context as it was in 2010. Health care in England has traditionally been coordinated and delivered through local planning and provider organisations which are part of the NHS. Whilst local NHS bodies have a degree of autonomy they have ultimately been accountable to the national government. Social care has been the responsibility of local authorities which have their own democratically elected governance structures. Local authorities follow national policy but have more autonomy than the NHS to decide on how these are implemented and how available funding is deployed. As we outlined at that time, the need for joint working across health and other agencies had been recognised for as long as the UK welfare state had been around. From the mid-1970s until the late 1990s there had been a range of consultative and planning committees established to encourage joint working in addition to a statutory duty for health and local government to collaborate. From the late 1990s, however, we saw a step change in the policy arena as partnerships emerged as a key priority area. A range of different organisational forms such as Care Trusts [ 2 ] and Children’s Trusts [ 3 ] were initiated alongside various changes to legal powers and policy exhortations [ 4 ]. These organisations were responsible for the planning and purchasing of services [i.e. commissioning in English terminology] and/or the delivery of community services. Over this period, the case was firmly made that collaboration was a necessity between health and social care. Indeed, this agenda was so firmly pressed that arguably it became heretical to even challenge the idea that partnerships were needed [ 5 ]. As we stated in 2011, ‘it has become increasingly clear that people do not live their lives according to the categories created in our welfare systems – and some form of joint working is essential if we are to find meaningful ways of joining up services in order to meet complex needs more fully’ [ 1: pg. 7 ].

Between 1997 to 2010, New Labour exhorted, compelled and incentivised agencies to work in partnership through a variety of means. For the most part, the governments of this period were not prescriptive about the form health and social care partnerships should take and seemingly allowed a level of local discretion in terms of how agencies, organisations and individuals would work together. National government focused on creating a context that was receptive to partnership working, promoting a series of different organisational structures that local areas could explore if they felt that they were right for them, and removing legislative boundaries to closer joint working. Yet, this focus on the macro level may have come at the detriment of the local level, where the actual work of collaboration is done [ 6 ]. As we argued in 2011, successive English governments had been unduly focused on the ‘structural’ elements of partnership working, which failed to acknowledge the reality of the ways that organisations and professionals develop relationships and trust in order to be able to work together. Joint working is about more than simply the removal of organisational and legislative boundaries, and the continual reorganisation of health and social care agencies continued to hamper attempts of local organisations in working together. It is perhaps unsurprising that a number of different studies remained skeptical as to whether partnerships had proved able to deliver significant outcomes [ 7 , 8 , 9 , 10 ]. However, as a caveat to this statement, a number of evaluators noted that the research evidence is not replete with rigorous studies of the outcomes of partnership working and that the challenges in undertaking this kind of research are plentiful [ 11 , 12 ].

What happened next?

As summarised above and in our original article [ 1 ], between 1997 and 2010 successive Labour governments placed significant emphasis on partnership working through a series of policy reforms. This period also saw substantial increases in health and social care funding over a sustained period, albeit the worldwide economic crisis of 2007–08 made future increases difficult for any government. In 2010, Labour lost the general election and a new government was formed by a Conservative-Liberal Democrat Coalition (2010–15). Within this government the Conservatives were particularly committed to a policy of austerity that resulted in reductions in public service expenditure. In 2015, the Coalition was replaced by a standalone Conservative government, which remains in charge at the time of writing (albeit with a series of different leaders over time). Below we set out the policy context with respect to the key issues relating to joined-up working in terms of three phases (2010–15, 2015–20 and the response to COVID-19). This is a necessarily brief account, but more detail can be found in [ 13 , 14 , 15 ].

Integrated care under the Coalition (2010–15)

Initially, there was little mention of joint working under the Coalition government. Their reforms were focused on increasing market forces in the NHS and putting oversight of local markets in the hands of general practitioners through Clinical Commissioning Groups. However, this became a specific policy priority after being taken up by the NHS Future Forum [a group of health and social care leaders and other stakeholders set up to review the government’s 2012 health reforms, established after a significant backlash to a perceived focus on competition over collaboration]. Whereas the previous government had used terms such as ‘partnership working’ and ‘joined-up solutions to joined-up problems’, the Future Forum and the Coalition tended to talk about ‘integrated care’ (sometimes referring to vertical integration between hospitals and community, and sometimes seeming to refer to horizontal integration between health and social services). This culminated in the publication of a ‘shared commitment’ to integrated care by all of the key national governmental and independent bodies for health and social care [ 16 ]. This was focused around the definition of person centred and coordinated care that was developed by the charity National Voices for this new National Collaboration: “I can plan my care with people who work together to understand me and my carer[s], allowing me control, and bringing together services to achieve the outcomes important to me.” [ 17: p. 3 ].

While the notion of ‘integrated care’ was widely promoted, there felt a potential disconnect between the senior health and social care stakeholders who had genuinely championed it, and a government looking for new language and approaches to salvage its controversial health reforms. As part of these changes, public health responsibility [and associated staffing and funding] for improving the health of the local population passed from the NHS to local government. This included providing information and advice on health improvement, supporting people to adopt healthier lifestyles and researching health inequalities. Other public health responsibilities such as protecting the public from major hazards and responding to public health emergencies passed to a new national body (Public Health England). A raft of supporting legislation and nationally led initiatives were introduced ( Table 1 ) These included the Better Care Fund to invest in joint priorities [with initial flexibility being reduced over time and becoming more focused on core NHS priorities such as tackling delayed hospital discharges]. The creation of Health and Wellbeing Boards within local government to bring together different partners to develop local strategies for health improvement (that seemingly had significant responsibilities and very little power to actually bring about change). Two pilot projects (the ‘Integrated Care Pioneers’ and ‘Vanguard’ sites), set up by slightly different parts of government to test new ways of joint working, arguably created a degree of overlap and confusion. Over time, there was a growing sense these were losing their initial locally-owned priorities and became dominated by targets relating to emergency hospital admissions and timely discharges from hospital.

Key policy initiatives and legislation relating in integrated health and social care in England between 2010 and 2014.

These various different initiatives proved unable to overcome the pressures and tensions created by austerity and by the Coalition’s reorganisation of the NHS (abolishing Strategic Health Authorities, who had a regional overview of the system, replacing more managerially-led Primary Care Trusts with more clinically-led Clinical Commissioning Groups, and creating a series of new national bodies). In effect, the impression was of a series of attempts to join back together relationships and accountability mechanisms that had been swept away, and to replace functions that turned out to be essential after they were abolished.

Integrated care under the Conservatives (2015-)

The Conservative governments between 2015 – 2020 sought not to reverse the fundamental issues of fragmentation within the health reforms but rather to introduce a series of NHS developments to recreate some of the governance and accountability mechanisms needed to help the health and social care system work together more effectively ( Table 2 ). At the regional level, this included the creation of Sustainability and Transformation Plans (STPs) across 44 different areas of England, in an attempt to bring key partners together to work on system-wide issues. These were NHS bodies which had no legal standing and for whom accountability was unclear other than being required to submit their plans for approval by national bodies. STP’s varied significantly in terms of the extent that individual partners are genuinely committed to the broader partnership, and some were accused of developing plans for potentially significant service change behind closed doors. Over time, the aspiration became to develop these into ‘Integrated Care Systems’ (ICS), a deeper collaboration to take more joint responsibility for local health care system resources and performance. Interestingly, these mechanisms lacked a statutory basis, making it difficult to know where power really resides, who to hold to account and how best to bring together a series of standalone health and social care organisations who are ultimately accountable to their own Boards or local councillors, rather than to each other. At the same time there was also been a trend towards greater economies of scale, with a number of mergers taking place between local hospital, community health and mental health providers. While policy remained based on an ongoing purchasing-provider split, the reality was that significant power lay with large acute providers, who seemed increasingly dominant within their local health economies. Within general practice, General Practitioners were encouraged to form new Primary Care Networks based on local communities of around 30,000 to 50,000 people, combining local care with the economies of scale that come from multiple practices working together.

Key policy initiatives and legislation relating in integrated health and social care in England between 2015 and 2020.

The response to COVID-19

As the effects of the COVID-19 pandemic began to spread around the world, this has intensified the need for public services such as health and social care to work together. At the local level this led to a series of very rapid and innovative bottom-up approaches, potentially overcoming years of tensions and barriers. In one locality, for example, there was joint work to tackle rising rates of domestic violence, action to reduce rough sleeping during the national ‘lockdown’, and work with supermarkets, banks, IT providers and the voluntary sector to make sure that families in need were fed, had access to emergency finance and had internet access for educational purposes [personal communication].

However, such activity often took place underneath the policy radar, and there were significant criticisms that national policy has prioritised urgent changes to the delivery of hospital services at the possible expense of others parts of the health and social care system. While a key priority was quite rightly been to reconfigure hospital services, expand intensive care and maintain as many other health services as possible, services such as care homes or supported housing felt almost entirely neglected, struggling with access to personal protective equipment, with staffing, with funding and with devastating mortality rates [ 18 ]. Even national attempts to say thank you to public sector workers helping to get society safe seemed to priortise NHS staff, with care workers feeling marginalised and under-appreciated. None of this has been caused by the pandemic as such but rather highlighted the fragmentation and vulnerability of adult social care to an even greater extent than before.

During this period the government announced that Public Health England, only created during the Conservative health reforms of 2012, would be replaced by a new National Institute for Health Protection, amidst fears that Ministers were seeking to pass responsibilities for national failures to an arms-length body. There were also been significant debates around the respective roles of the Secretary of State for Health and Social Care and NHS England [the body created in 2012 to give the NHS a degree of independence from day-to-day government intervention in the health service].

What difference have these policies made?

The overall objectives of these various integration strategies was articulated in a cross-departmental policy statement [ 16 ]. This reflected the widely adopted ‘triple aims’ of integrated care – “individual experience of integrated care and support that is personalized and coordinated, shift away from over-reliance on acute care towards focus on primary and community care, and population based public health, preventative and early intervention strategies” [p. 13]. Given the prioritisation of integration and the considerable financial investment connected to its implementation, there was a series of reviews by Parliamentary committees and national scrutiny bodies to determine the difference this has made. These suggested a degree of progress has been made towards the over-reliance on acute care. For example, the National Audit Office [ 19 ] reported the Better Care Fund resulted in a reduction in permanent admissions of older people to care homes, and a greater proportion of older people remained at home following discharge from hospital. The Vanguards in particular were seen to be successful in reducing growth of emergency admissions to hospital [ 20 ] and there was also a steady reduction in the number of hospital beds occupied by people who were fit to be discharged but were experiencing a ‘delayed transfer of care’ between 2017 and 2019 [ 21 ].

Overall it is clear that integration of care in England has not achieved the wide variety of different aims and objectives that have been aspired to. For example, patients report that since 2012 they are less involved in making decisions regarding their primary care services and receive less support to manage their own care [ 22 ]. National data suggests emergency admissions have continued to grow and many of these are avoidable. For example, in 2016–2017 NHS England estimated that 24% were avoidable [ 23 ]. Moreover, there has been a general slowing in the increase of life expectancy with the greatest impact in areas of high deprivation. Female life expectancy has declined in the more deprived 10 per cent of neighborhoods and regional inequalities in life expectancy have also grown. In 2018 there were 69 percent more children within homeless families in temporary accommodation in 2018 than in 2010, child poverty rates have returned in the same time period to pre-2010 levels [ 24 ]. Care for particular ‘seldom heard’ groups has also been of significant concern. For example, there have been several national policy initiatives during the decade to reduce the number and length of stay of people with a learning disability and complex needs who are detained for extended periods in assessment and treatment facilities [e.g. 25 , 26 ]. Despite these, and the connected investment in partnership infrastructure, practice developments and performance monitoring, in 2020, 2,095 people were being cared for in such facilities and over 60% were subject to stays of over 2 years [ 27 ]. The “undignified and inhumane care” that many received could have been avoided through better coordination and community based support [ 28: p. 3 ].

A major issue within all forms of integrated care is the high level of variation across England. A minority of areas do appear to have made substantial progress in relation to better joint working between health and social care (for example Frimley, Nottinghamshire and Greater Manchester). However the majority have not made such bold progress and some have achieved little improvement in their ability to better collaborate across health and social care. As a consequence, cross-bench committees of Members of Parliament have questioned the government’s ability to achieve consistent integration of care [ 20 , 29 , 30 ], as have national scrutiny bodies [e.g. 23 , 31 ]:

“There are examples across England where integrated working has been successfully applied. But it is a long way from being in place everywhere, with a range of longstanding legal, structural and cultural barriers hindering the pace and scale at which change can happen.” [ 20: p. 3 ] “The Department’s expectations of the rate of progress of integration are over-optimistic. Local areas that have achieved more coordinated care for patients from closer working between social care and NHS organisations have been doing so for up to 20 years.” [ 19: p. 18 ]

Local factors have undoubtedly had a role in this lack of consistent improvement. While some leaders are able to work beyond their organisational interests in order to respond to the needs of local communities, there are also many examples where this is not the case. Social care and the wider voluntary sector are still often excluded from strategic discussions and the pressure of responding to COVID-19 has led to greater tension [ 31 ]. The factors that have enabled better local collaboration in England are not new – a common vision focused on the local population, joint planning and funding arrangements, a supported and resourced workforce, and shared governance and communication processes [ 32 ]. Leadership continues to be highlighted as a vital enabler or major barrier [ 19 ]. Put simply, where senior leaders are willing to engage, understand and respond to those from other sectors there is the opportunity for progress. Where this is not the case, however, fragmentation remains and opportunities to explore new flexibilities are not exploited [ 32 ]. Once again, the importance of trust between individuals and the necessity of forums and meetings in which constructive relationships between health and social care organisations can be fostered has been highlighted.

Alongside local factors there remain numerous other barriers that restrict integration. While pooling of funds is possible, the legislative framework makes this a complex and arduous task due to a requirement on individual organisations to safeguard their own financial position [ 30 ]. There are different regulations regarding Value Added Tax (a general tax on goods and services) for NHS organisations, independent providers and local authorities which can result in unaffordable tax bills being levied on new organisational partnerships [ 30 ]. Major problems with transferring staff between sectors due to pension differences also remain [ 30 ]. Similar challenges relate to siloed regulatory regimes and to STPs and ICSs not having the legislative status of ‘statutory bodies’. They do not have formal legal authority, and runs the risk of undermining transparency and accountability [ 30 ]. The discrepancies between health and social care present numerous difficulties. These include: the financial insecurity of social care providers and thereby sustainability of the market; enormous challenges concerning the recruitment and retention of social care staff; considerable differences in terms of pay and the status of the health and social care workforces; and, the sheer complexity of social care funding. National bodies have also been seen to have most interest in those areas making greatest progress to the practical and financial detriment of areas finding integration harder to achieve [ 29 ]. Finally, unprecedented cuts to local authorities and related public bodies has led to a decline in spending on social determinants of health with more deprived areas and populations being disproportionally affected [ 21 ].

The continued fragmentation between health and social care was perhaps most acutely demonstrated during the early stages COVID 19 pandemic. The National Audit Office [ 37 ] reported that responding to the emerging situation was “undoubtedly made harder because of historic and unaddressed differences and divisions between the two sectors” [p4]. It appeared that the focus of government was on ensuring that hospitals had sufficient capacity with insufficient attention paid to the risks of the virus spreading to residents and staff within care homes. For examples, there was an initial lack of requirement for all patients discharged from hospital to have a COVID test and an expectation that care homes must fill their capacity and admit patients with COVID 19. Testing was subsequently introduced on discharge due to numerous outbreaks within care homes. Similarly, whilst there were problems in relation to clarity of guidance and practical access to personal protective equipment in both sectors, social care providers raised concerns that the advice was tailored to health care settings and that they had even greater difficulty in obtaining sufficient supplies [ 38 ]. It is worth noting that the major discrepancies between health and social care relate to decisions taken at the national level. Within local areas, there were numerous examples of constructive collaboration with reports that the scale and urgency of the response resulted in the “breaking down of longstanding boundaries” between health and social care [ 39 p5].

So what might we take from the last few decades of England’s experience of integrated care? In one sense this is a success story. It is clear that integrated care matters. Under governments of different hues, although the terminology has changed, integrated care has remained a key area of policy focus and of significant local activity and commitment. For all of the well-rehearsed difficulties associated with integrating care, health and social care professionals know that they need to work together to deal with many of the pressing challenges that their organisations and communities face. While progress can be slow and incredibly frustrating, professionals, local services and policy makers all want to make integration work – and what was once something of a ‘bolt-on’ to traditional ways of working has now become part of the mainstream.

Despite these changes in emphasis and focus, the greatest progress has arguably been made when local areas have focused on specific tangible tasks or issues. To some extent this is not a new observation, with some of the authors noting this in relation to joint commissioning nearly a decade ago [ 33 ]. Where local aspirations for integrated care are broad and amorphous (e.g. ‘reduce health inequities’, ‘improve care’) there is greater room for this to be interpreted in multiple ways and this is less able to galvanize local action. Where specific locally-relevant aspirations are articulated that a range of partners are able to buy into or take ownership of, these have a greater chance of being achieved. Individuals and their organisations are more likely to put aside differences and be willing to take the risk of trusting each other when they can see tangible benefits. What this means is that integrated care initiatives need to be clear about what they are trying to achieve and for whom, design their approach with this in mind, and regularly measure their performance against these goals in order to be effective.

In other ways, however, the English experience is less of a success story. There is still too much of a tendency to see integration as somewhat of a prescription for all ills. As such there is a tendency to over-promise in terms of what can be delivered and this inevitably sets some initiatives up to fail. We need to have more realistic views of what can be achieved through integration and the amount of time that it takes to achieve this – particularly when setting up new initiatives (or even new organisations) from scratch. While we may see some early impacts around delayed transfers of care or emergency readmissions to hospitals, it might take longer to see significant impacts or to see broader changes (such as a reduction in health inequalities). If we expect too much of these integration arrangements, we are setting them up to fail. This can disengage staff and those using these services as they will lose trust in the promised made by those in more senior roles within partnerships.

One of the issues we have clearly seen is that a hyperactive policy context is not helpful to developing and sustaining joint activity. Over at least the last ten years, we have seen a layering of new policy on top of old policy and a number of pilots that have been established but not maintained for sufficiently long to have an influence on mainstream services. Just over a decade ago, Professor Kieran Walshe [ 34 ] described the continual reorganisation of the NHS as creating organisational ‘shanty towns’, where new entities were hastily constructed, knowing that they too would soon be swept away. The recent experience of integrated care again demonstrates that this kind of frenetic policy context is not helpful to creating and maintaining relationships or to building for the long-term. Rather than simply bolting on new policy reforms or new agencies we would argue we need to fundamentally change the underlying system if we are serious about making integrated care work.

Walter Leutz [ 35 ] famously set out his five laws of integration and his fourth point was that ‘you can’t integrate a square peg into a round hole’. This law is sometimes interpreted to mean that you cannot prescribe one approach to integration and all approaches need to be locally developed. The English experience demonstrates this to be true. But Leutz, in making this point, was also indicating that some systems are unable to be integrated because they simply do not fit together. We might argue that after more than two decades of significant effort to drive integration, any lack of further progress is unlikely to be simply due to a lack of will or effort. Instead, it is likely that there is a more fundamental issue at the core of this lack of widespread success. English health and social care services were simply not designed either as a system or with integration in mind. This issue has arguably become even clearer over the last decade as we have seen social care starved of funding. As a result, it remains the poor relation of the NHS. All too often policies badged as being about ‘integrated care’ default to health-related outcomes and to hospital care (which is the most powerful and best resourced part of the current system). Unless we see significant investment in social care and pay attention to the underlying funding of core services then it will remain difficult to drive integration much further and maintain progress on a long term basis.

As 2020 came to an end, Integrated Care Systems were confirmed to be the principal vehicle through which greater collaboration is to be achieved in the decade to follow. A consultation document set out proposals that would address a number of the concerns outlined above [ 36 ]. This includes giving Integrated Care Systems a stronger footing in legislation, aligning priorities through a common ‘triple aim’ duty on all NHS organisations, and developing a ‘single’ health care funding pot with local freedoms. All worthy developments, but the document is undeniably still NHS-centric with local authorities and the voluntary sector getting scant mention other than being noted as important partners to the NHS. Even less considered is how people and communities will be able to influence the work of these powerful new bodies. Casting our minds back to the beginning of the decade, this presents a contrasting image to the shared vision launched by the National Collaboration. More people-centric in tone, it suggested greater equality between health and social care, the NHS and local authorities, and the statutory and voluntary sectors. Instead, the image portrayed is that Integrated Care Systems are at their heart a health care concern. If this proves to be the case, then much of the good work from the 2010’s will be lost. This would be a travesty, particularly in light of the acceleration in collaboration between health and social care that was experienced by many local areas by the end of the first year of the COVID 19 response. The pandemic has left local authorities and therefore social care in an even worse financial position and the NHS has accumulated huge waiting lists for planned care procedures. There is therefore a significant danger that these sectors may retreat to focus on their own pressures. One must hope that other countries can still learn from what went well and that, in time, England will regain its vision for a more holistic and equitable health and social care system.

Acknowledgements

RM’s contribution was supported by the National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) West Midlands. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Funding Statement

Dr Frances Cunningham, Honorary Fellow, Menzies School of Health Research, Australia.

Prof. dr. Mirella MN Minkman, CEO, Vilans, Netherlands.

Competing Interests

The authors have no competing interests to declare.

• Introduction
• Conclusions
• Article Information

A, Adjusted odds ratios and 95% CIs for the outcome of any in-hospital PT or OT were derived from logistic regression models. B, Adjusted rate ratios and 95% CIs for the outcome of rate of in-hospital PT or OT were derived from Poisson regression models. All models were constructed separately for each exposure and adjusted for the same set of covariates (age, sex, pre–intensive care unit count of disabilities in activities of daily living, use of mechanical ventilation, and count of organ dysfunction as a surrogate for severity of illness).

Estimates were derived from the multivariable logistic regression model adjusting for covariates of age, sex, pre–intensive care unit count of disabilities in activities of daily living, use of mechanical ventilation, and count of organ dysfunction as a surrogate for severity of illness.

Estimates were derived from the multivariable Poisson regression model adjusting for covariates of age, sex, pre–intensive care unit count of disabilities in activities of daily living, use of mechanical ventilation, and count of organ dysfunction as a surrogate for severity of illness, as described in the methods.

eFigure. Assembly of the Analytic Sample

eTable 1. ICD-9 and ICD-10 Codes Used to Identify Mechanical Ventilation and Organ Dysfunction

eTable 2. Sensitivity Analysis for the Outcome of Any In-Hospital Physical and/or Occupational Therapy Excluding ICU Hospitalizations From NHATS Participants Who Were Admitted From a Nursing Home or Had a Stay in a Nursing Home of ≥100 Days Between Pre-ICU NHATS Interview and Index ICU Hospitalization

eTable 3. Sensitivity Analysis for the Outcome of Rate of In-Hospital Physical and/or Occupational Therapy Excluding ICU Hospitalizations From NHATS Participants Who Were Admitted From a Nursing Home or Had a Stay in a Nursing Home of ≥100 Days Between Pre-ICU NHATS Interview and Index ICU Hospitalization

Data Sharing Statement

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Jain S , Murphy TE , Falvey JR, et al. Social Determinants of Health and Delivery of Rehabilitation to Older Adults During ICU Hospitalization. JAMA Netw Open. 2024;7(5):e2410713. doi:10.1001/jamanetworkopen.2024.10713

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Social Determinants of Health and Delivery of Rehabilitation to Older Adults During ICU Hospitalization

• 1 Section of Pulmonary, Critical Care, and Sleep Medicine, Department of Internal Medicine, Yale School of Medicine, New Haven, Connecticut
• 2 Department of Public Health Sciences, Pennsylvania State University, State College
• 3 Department of Physical Therapy and Rehabilitation Science, University of Maryland School of Medicine, Baltimore
• 4 Program on Aging, Yale School of Medicine, New Haven, Connecticut
• 5 Department of Sociology, Yale University, New Haven, Connecticut
• 6 Center for Outcomes Research and Evaluation, Yale New Haven Hospital, New Haven, Connecticut

Question   Are social determinants associated with differential delivery of skilled rehabilitation services to older adults during hospitalization with a critical illness?

Findings   In this cohort study of 1618 hospitalizations in older adults, after accounting for prehospitalization disability and acute illness characteristics, dual Medicare and Medicaid eligibility and rural residence were associated with a lower likelihood of delivery of any rehabilitation, whereas limited English proficiency was associated with reduced amount of rehabilitation services delivered during a critical illness hospitalization.

Meaning   These findings suggest social determinants of health should be taken into consideration in efforts to enhance equitable delivery of skilled rehabilitation to older adults who are critically ill.

Importance   Older adults with socioeconomic disadvantage develop a greater burden of disability after critical illness than those without socioeconomic disadvantage. The delivery of in-hospital rehabilitation that can mitigate functional decline may be influenced by social determinants of health (SDOH). Whether rehabilitation delivery differs by SDOH during critical illness hospitalization is not known.

Objective   To evaluate whether SDOH are associated with the delivery of skilled rehabilitation during critical illness hospitalization among older adults.

Design, Setting, and Participants   This cohort study used data from the National Health and Aging Trends Study linked with Medicare claims (2011-2018). Participants included older adults hospitalized with a stay in the intensive care unit (ICU). Data were analyzed from August 2022 to September 2023.

Exposures   Dual eligibility for Medicare and Medicaid, education, income, limited English proficiency (LEP), and rural residence.

Main Outcome and Measures   The primary outcome was delivery of physical therapy (PT) and/or occupational therapy (OT) during ICU hospitalization, characterized as any in-hospital PT or OT and rate of in-hospital PT or OT, calculated as total number of units divided by length of stay.

Results   In the sample of 1618 ICU hospitalizations (median [IQR] patient age, 81.0 [75.0-86.0] years; 842 [52.0%] female), 371 hospitalizations (22.9%) were among patients with dual Medicare and Medicaid eligibility, 523 hospitalizations (32.6%) were among patients with less than high school education, 320 hospitalizations (19.8%) were for patients with rural residence, and 56 hospitalizations (3.5%) were among patients with LEP. A total of 1076 hospitalized patients (68.5%) received any PT or OT, with a mean rate of 0.94 (95% CI, 0.86-1.02) units/d. After adjustment for age, sex, prehospitalization disability, mechanical ventilation, and organ dysfunction, factors associated with lower odds of receipt of PT or OT included dual Medicare and Medicaid eligibility (adjusted odds ratio, 0.70 [95% CI, 0.50-0.97]) and rural residence (adjusted odds ratio, 0.65 [95% CI, 0.48-0.87]). LEP was associated with a lower rate of PT or OT (adjusted rate ratio, 0.55 [95% CI, 0.32-0.94]).

Conclusions and Relevance   These findings highlight the need to consider SDOH in efforts to promote rehabilitation delivery during ICU hospitalization and to investigate factors underlying inequities in this practice.

Surviving a critical illness, an increasingly common occurrence among older adults, 1 - 3 is frequently accompanied by new or worsening disability. 4 , 5 Skilled rehabilitation with physical therapy (PT) and occupational therapy (OT) during hospitalization facilitates mobilization of patients recovering from critical illness and is known to prevent functional decline 6 - 8 and help to identify post-acute care needs. 9 Therefore, inequitable delivery of rehabilitation services to older adults with social or economic disadvantage may contribute to downstream disparities in disability. 10 Whether social determinants of health (SDOH) are associated with differences in delivery of skilled rehabilitation during a critical illness hospitalization is unknown.

Prior studies have described wide variation in clinician-reported delivery of rehabilitation services to patients who are critically ill. 11 - 13 Cross-sectional studies of hospitals participating in trial networks or quality improvement collaboratives have yielded similar results. 14 - 16 However, these studies did not investigate associations between SDOH and delivery of in-hospital rehabilitation. Many patient- and hospital-level factors known to be associated with prescription of skilled rehabilitation to patients who are critically ill can be affected by SDOH. 11 , 17 - 19 For example, limited English proficiency (LEP) could be associated with lower rehabilitation delivery due to perceived barriers to engagement with therapy services or differences in management of sedation and delirium by clinicians. 20 Furthermore, variation in resources and practices at hospitals caring for a higher proportion of patients with socioeconomic disadvantage could lead to reduced delivery of skilled rehabilitation services, as has been observed for other care processes. 21 , 22 A common challenge in evaluation of health care disparities is the absence of granular information on SDOH, such as LEP, income, and education, and preexisting health status, that could influence in-hospital treatment needs, such as prehospitalization disability in the case of rehabilitation services. We leveraged a nationally representative longitudinal study of aging with detailed information on SDOH and prehospitalization geriatric risk factors, linked with administrative claims, to investigate whether SDOH are associated with differences in the delivery of skilled rehabilitation to older adults during hospitalization in an intensive care units (ICU).

The protocol for the National Health and Aging Trends Study (NHATS) was approved by the Johns Hopkins University institutional review board, and our cohort study using these data was approved by the Yale University institutional review board. All participants provided informed consent. We followed the Strengthening the Reporting of Observational Studies in Epidemiology ( STROBE ) reporting guideline.

Data were drawn from the National Health and Aging Trends Study (NHATS), a longitudinal, nationally representative survey of community-dwelling Medicare beneficiaries ages 65 years and older living in the contiguous United States. 23 The initial sample was drawn from the Medicare enrollment database on September 30, 2010. 24 The survey collected information on sociodemographics, including race and ethnicity, insurance, education, income, English proficiency, rural residence, and clinical characteristics, through annual in-person interviews starting in 2011. If a participant was unavailable for interview, a proxy knowledgeable about their health was interviewed. Race and ethnicity were categorized as Hispanic, non-Hispanic Black, non-Hispanic White, and other (including participants reporting race as American Indian, Alaska Native, Asian, Native Hawaiian, Pacific Islander, or other race). Race and ethnicity were included in descriptive analyses because they are key SDOH.

ICU admissions were identified through linked inpatient claims files for Medicare fee-for-service and Medicare Advantage participants using critical care revenue codes indicating admission to general, specialty, or coronary care units but excluding psychiatric and intermediate care units. 25 Information on mechanical ventilation and organ dysfunction was obtained using International Classification of Diseases, Ninth Revision, Clinical Modification ( ICD-9-CM ) and International Statistical Classification of Diseases, Tenth Revision, Clinical Modification ( ICD-10-CM ) diagnosis and procedure codes (eTable 1 in Supplement 1 ). 26 , 27 ICU length of stay was determined based on days with a critical care revenue code.

Our primary outcomes were delivery of any PT or OT, as determined by revenue center codes 042.X and 043.X respectively, and amount of PT or OT, determined as number of units of evaluation or treatment delivered during ICU hospitalization. In general, PT and OT are billed in 15-minute increments; therefore, 1 billed unit represents 15 minutes of intervention by a therapist. These units were modeled as units per day to account for differences in hospital length of stay. Since services between 8 and 22 minutes are aggregated as a single unit, the observed rate of therapy is a rounded assessment of the actual delivered amount of therapy.

Given its previously reported associations with increased risk for functional decline following critical illness and reduced delivery of in-hospital rehabilitation to older adults, our primary exposure was dual eligibility for Medicare and Medicaid. 10 , 28 We additionally explored associations of other SDOH that have been linked to rehabilitation delivery in other populations or settings 29 - 31 and were available in NHATS or Medicare claims data. SDOH assessed in this study included income, education, LEP, and rurality. Dual-eligibility for Medicare and Medicaid was assessed using the dual Medicare-Medicaid status indicator in the Medicare Master Beneficiary Summary File at any time during the year preceding the ICU hospitalization. Information on other SDOH was derived from the participant’s NHATS survey immediately preceding ICU hospitalization. Income and assets were assessed using a composite of income from Social Security; Department of Veterans Affairs; pension; retirement plans; funds, stocks, and bonds; and checking and savings accounts and operationalized as quartiles in our sample. 23 The only missing data were on household income; missing data were imputed using values provided by NHATS. 32 Education was characterized as less than high school vs more. LEP was operationalized as a response of not well or not at all, as opposed to well or very well, to questions about how well respondents understand or speak English. 23 , 33 Residence was classified as rural (nonmetropolitan) vs urban (metropolitan), as assigned by NHATS based on the Office of Management and Budget classification of county of residence. We considered but did not evaluate the exposure of race and ethnicity because of small proportions of participants who identified as a race other than Black or White in our sample.

We selected covariates that could be potential confounders in rehabilitation delivery based on prior research and clinical relevance. We included age categorized into intervals based on proportions in our sample (65-74, 75-79, 80-84, 85-89, and ≥90 years), sex, count of disabilities in the NHATS interview preceding ICU hospitalization (defined as need for help or inability to perform activities of daily living, including 4 self-care activities [eating, bathing, using the toilet, and dressing] and 3 mobility activities [getting outside, getting around inside one’s home, and getting out of bed]), 10 , 34 use of mechanical ventilation (eTable 1 in Supplement 1 ), and severity of illness (determined as count of organ dysfunction). 27

Assembly of the analytic sample is presented in the eFigure in Supplement 1 . We identified 2832 NHATS participants from 2011 to 2018 who had a hospitalization with an ICU admission for at least 1 day. Participants could contribute multiple observations; however, we restricted our sample to 2299 first ICU hospitalizations in the interval between consecutive annual NHATS interviews to allow updating model covariates. After excluding hospitalization from 681 participants who were not community-dwelling at the pre-ICU NHATS interview, our sample included 1618 ICU hospitalizations.

We describe demographic and clinical characteristics of our sample using means and SDs or medians and IQRs for continuous variables and counts and weighted percentages for categorical variables, as appropriate. For each person-year of NHATS data, we used specific analytic weights that adjust for differential probabilities of selection and nonresponse within each strata (region) and cluster (zip code within county); this allows generalization to the 2011 Medicare population. 35 , 36 For income, NHATS provided 5 imputed data sets that were used only in the models testing this exposure. 32 Among other exposures considered in the models, only education had any missing data (0.7%). Hence, our models were based on complete case data. We separately fit multivariable logistic regression models for the binary outcome of delivery of any in-hospital PT or OT on each of the 5 exposures with adjustment for covariates. For exposures with a significant association with this outcome, we calculated risk differences. For the rate of PT or OT delivered per day of hospital stay, we fit multivariable Poisson regression models on each of the exposures with adjustment for the same covariates. We calculated least square means of the outcomes significantly associated with this outcome. Because the provision of PT or OT could be prioritized to patients presumed to be discharging to a facility, we conducted sensitivity analyses excluding participants admitted from a nursing home or with a stay 100 days or more between pre-ICU NHATS interview and index ICU hospitalization. We used SAS software version 9.4 (SAS Institute) for descriptive analyses and SAS-callable SUDAAN software version 11 (RTI International) for all models. To account for the small number of participants who contributed multiple hospitalizations, we used generalized estimating equations with an exchangeable covariance structure based on its minimization of quasilikelihood under the independence model criterion. In all analyses, significance was defined as a 2-tailed P  < .05. Data were analyzed from August 2022 to September 2023.

Our sample included 1618 ICU hospitalizations across 569 hospitals ( Table ). Patients had a median (IQR) age of 81.0 (75.0-86.0) years, and 842 (52.0%) were female. The sample included 371 patients (22.9%) with dual Medicare and Medicaid eligibility, 523 patients (32.6%) with less than high school education, 320 patients (19.8%) with rural residence, and 56 patients (3.5%) with LEP. Median (IQR) income was $22 000 ($12 000-$41 000).

A total of 1076 patients (68.5%) received any PT or OT during ICU hospitalizations. We observed decreased receipt of any PT or OT for hospitalizations among patients with Medicare and Medicaid dual eligibility (228 hospitalizations [62.7%] vs 848 hospitalizations among patients without dual eligibility [69.9%]), rural residence (185 hospitalizations [60.1%] vs 891 hospitalizations among patients from urban areas [70.3%]), and below-median income (520 hospitalizations [65.5%] vs 586 hospitalizations among patients with above-median income [70.8%]). A mean of 0.94 (95% CI, 0.86-1.02) units/d was delivered. Patients with LEP received a lower rate of PT or OT (0.79 [95% CI, 0.76- 0.82] units/d vs 0.95 [95% CI, 0.90-0.99] units/d for those without LEP), as did patients with income above the median (0.84 [95% CI, 0.73-0.96] units/d vs 1.02 [95% CI, 0.91-1.03] units/d for those below median income).

Figure 1 presents the results of our multivariable models. Dual Medicare and Medicaid eligibility (adjusted odds ratio [aOR], 0.70 [95% CI, 0.50-0.97]) and rural residence (aOR, 0.65 [95% CI, 0.48-0.87]) were associated with lower odds of delivery of any PT or OT ( Figure 1 A). For risk differences, the percentage of ICU hospitalizations in which any PT or OT was delivered was 7.8% lower for dual-eligible older adults than for non-dual-eligible older adults and 9.5% lower for residents of rural vs urban areas ( Figure 2 ). For the rate of total therapy, LEP was associated with lower rates of in-hospital PT or OT compared with not having LEP (adjusted rate ratio [aRR], 0.55 [95% CI, 0.32-0.94]) ( Figure 1 B). On the absolute scale, a mean rate of 0.7 (95% CI, 0.4-1.2) units/d of PT or OT was delivered to participants with LEP, compared with 1.3 (95% CI, 1.1-1.5) units/d to those proficient in English ( Figure 3 ). Over a 5-day hospital stay, this would translate into 24 to 66 fewer minutes of therapy for patients with LEP compared with those proficient in English. Having an income between $12 000 and $22 000 was also significantly associated with a lower rate of therapy delivered (aRR, 0.71 [95% CI, 0.52-0.95]) compared with the highest quartile of income; the other income categories did not demonstrate significant associations ( Figure 1 B).

In sensitivity analyses excluding hospitalization for participants who were admitted from a nursing home or had a nursing home stay of at least 100 days between their pre-ICU NHATS interview and the index ICU hospitalization, the magnitude and direction of association between the exposures and both outcomes were similar, albeit with wider CIs (eTable 2 and eTable 3 in Supplement 1 ).

In this nationally representative cohort study of older adults, we found that select SDOH were associated with reduced delivery of skilled rehabilitation services during hospitalization for critical illness. After accounting for prehospitalization disability and severity of acute illness, older adults who were dually eligible for Medicare and Medicaid and those who resided in rural areas had 30% to 35% lower odds of receiving any PT or OT during an ICU hospitalization than patients who were not dually eligible or who were proficient in English. Patients with LEP received lower amounts of therapy than patients proficient in English. Given the well-documented value of in-hospital rehabilitative PT and OT in preventing functional decline and identifying care needs at discharge following critical illness, 6 - 9 our findings of reduced delivery of these services to older adults by dual eligibility status, rural residence, and LEP warrant consideration of targeted efforts to mitigate inequities.

The prevalence of in-hospital rehabilitation delivery in our study was comparable with estimates from contemporary studies of acutely hospitalized patients. 28 , 37 , 38 Among patients who are critically ill, clinician surveys 11 , 12 , 39 and cohort studies of hospitals participating in trials or quality reporting initiatives 14 , 16 have reported wide variability in the use of PT and OT. Despite this known variability, to our knowledge, prior work has not evaluated the role of SDOH in the delivery of skilled rehabilitation services among Medicare beneficiaries. The availability of patient-level information on SDOH in NHATS, beyond those usually available in administrative data, allowed us to evaluate this important question.

Our findings of reduced delivery of skilled rehabilitation to older adults who are dually eligible for Medicare and Medicaid, live in rural areas, or have LEP may have explanations rooted in structural- and individual-level factors underlying in-hospital care delivery. First, factors related to resources and organization of rehabilitation services at hospitals deserve consideration. Staffing by physical therapists and nurses is associated with rehabilitation among patients who are critically ill. 11 , 18 Hospitals serving more dually eligible patients and those located in rural areas are generally more underresourced and may not be adequately staffed by professionals essential to delivering rehabilitation. 40 Similar to our findings, dual Medicare and Medicaid eligibility was associated with a lower likelihood of skilled rehabilitation among patients with acute stroke. 28 Second, percolation of evidence-based strategies, such as the ABCDEF bundle (assess, prevent, and manage pain; both spontaneous awakening and spontaneous breathing trials; choice of analgesia and sedation; assess, prevent, and manage delirium; early mobility and exercise; and family engagement and empowerment), 6 , 41 to promote rehabilitation may be lower at these hospitals. Study collaboratives promoting adoption of the bundle have typically engaged urban, academic hospitals 15 ; whether and how this guidance is translated into practice in rural hospitals should be explored. Third, the association between LEP and reduced PT and OT suggests that interpersonal communication barriers or implicit biases can underlie suboptimal delivery of rehabilitation, as described for other care processes. 20 , 42 Consistent with our observations, in a 2020 study at a safety-net hospital in Texas, speaking a language other than English or Spanish was associated with fewer minutes of therapy delivered to older adults hospitalized with prolonged acute illness. 29 Among patients who are critically ill, the reduced amount of rehabilitation services delivered to those with LEP could be due to differential prescription of rehabilitation services by physicians because of perceived barriers to engagement or differences in management of sedation and delirium that might influence a patient’s ability to participate in rehabilitation. 17 , 19 , 20

Our findings have important implications. First, immobility, a common occurrence during ICU hospitalization, is an important and modifiable risk factor for post-ICU disability. 6 - 8 While mobilizing hospitalized patients who are acutely ill can be achieved by personnel other than rehabilitation therapists, the complex feasibility and safety considerations for older adults who are critically ill usually warrant an interdisciplinary approach. 13 , 43 , 44 Evaluation by physical or occupational therapists is a part of recommended ICU mobilization protocols 6 , 7 , 45 and associated with its delivery in observational studies. 13 , 14 Therefore, while not equivalent to it, the lower delivery of PT or OT services by SDOH in our study likely represents underlying differences in ICU mobilization. Second, evaluation by physical and occupational therapists, usually on the wards, is important to identify postacute rehabilitation needs before hospital discharge. Reduced delivery of any PT or OT during hospitalization suggests that postacute rehabilitation needs are assessed less frequently among older adults with Medicaid and those in rural areas. In-hospital skilled rehabilitation is associated not only with higher mobility at discharge 9 , 46 , 47 but also improved long-term function among adults recovering from critical illness. 48 Therefore, reduced delivery of any rehabilitation during ICU hospitalization may represent a missed opportunity to improve long-term functional outcomes after critical illness and inequities in this practice can be a mechanism underlying disparities in post-ICU disability. 10

Our study has several strengths. First, we used a nationally representative sample of older adults with ICU hospitalization. Second, we included granular assessment of prehospitalization disability that could influence in-hospital rehabilitation needs. Third, we had information on SDOH using instruments specifically tailored for older adults, 23 Fourth, we used rigorous methods to determine delivery of PT and OT using claims data. 28 , 49 , 50

Our findings should be interpreted in the context of a few limitations. First, we could not distinguish the contribution of hospital-level effects or evaluate hospital factors, such as supply of physical therapists, due to the limited number of observations per hospital and hospital-level information in our claims-linked NHATS data. This should be investigated in future work to understand the role of structural factors in driving differences in rehabilitation delivery. Second, we could not distinguish the delivery of PT and OT in the ICU from that delivered elsewhere in the hospital; future studies evaluating this could guide efforts to mitigate differences. Third, we could not evaluate nurse-driven mobility. While this practice exists, an interdisciplinary approach, including at least an evaluation by rehabilitation therapists, remains usual practice in most US ICUs, 13 , 44 suggesting that in-hospital skilled rehabilitation, although not a surrogate for ICU mobilization, is likely associated with differences in this practice. Fourth, we did not have information on severity of illness scores, such as the SOFA score and Acute Physiology and Chronic Health Evaluation scale score, which are known to be associated with rehabilitation in the ICU. 51 Nevertheless we used a validated claims-based organ dysfunction algorithm to account for severity of illness. 27 Fifth, because of the small number of participants with self-reported race and ethnicity other than non-Hispanic Black or non-Hispanic White in our sample, we could not evaluate it as an exposure; future work should investigate this. Furthermore, because LEP and rurality were evaluated as exploratory exposures in our study, the observed associations should be further investigated in future studies.

In this nationally representative cohort study of older adults, dual eligibility for Medicare and Medicaid and rural residency were associated with lower likelihood and LEP was associated with reduced rate of delivery of skilled rehabilitation therapy during hospitalization with critical illness. Our findings highlight the need to consider these SDOH in efforts to enhance equitable delivery of skilled rehabilitation services during hospitalization. Future research is needed to distinguish individual- vs structural-level factors underlying differences in in-hospital rehabilitation delivery by SDOH.

Accepted for Publication: March 9, 2024.

Published: May 10, 2024. doi:10.1001/jamanetworkopen.2024.10713

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2024 Jain S et al. JAMA Network Open .

Corresponding Author: Snigdha Jain, MD, MHS, Section of Pulmonary, Critical Care, and Sleep Medicine, Department of Internal Medicine, Yale School of Medicine, 15 York St, New Haven, CT 06510 ( [email protected] ).

Author Contributions: Drs Jain and Ferrante had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Jain, Murphy, Zang, Ferrante.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Jain, Murphy.

Critical review of the manuscript for important intellectual content: All authors.

Statistical analysis: Jain, Murphy.

Obtained funding: Jain.

Administrative, technical, or material support: Jain, Leo-Summers, O'Leary, Zang.

Supervision: Jain, Falvey, Ferrante.

Conflict of Interest Disclosures: Dr Krumholz reported receiving grants from American Heart Association, Agency for Healthcare Research and Quality, National Institutes of Health (NIH), Johnson & Johnson, Janssen, Centers for Disease Control and Prevention, and Pfizer (paid to institution); personal fees from Massachusetts Medical Society Completed, Identifeye, F-Prime, UpToDate, Ensight, and Element Science; and serving as cofounder of ENSIGHT-AI, Refactor Health, and Hugo Health outside the submitted work. No other disclosures were reported.

Funding/Support: Drs Jain, Ferrante, Zang, and Gill received support from the Claude D. Pepper Older Americans Independence Center at Yale School of Medicine (award No. P30AG021342). Dr Jain was supported by the Parker B. Francis Family Foundation Fellowship Award, Yale Physician-Scientist Development Award (award No. KL2 TR001862) from the National Center for Advancing Translational Science of the NIH, and National Institute On Aging (NIA) of the NIH (award No. R03AG078942). Dr Ferrante is supported by the NIA (award No. K76 AG057023. Falvey is supported by the University of Maryland Claude D. Pepper Center and the NIA (award No. K76AG074926). Dr Zang is supported by the NIA (award No. R21AG074238-01).

Role of the Funder/Sponsor: The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Data Sharing Statement: See Supplement 2 .

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