May 15 2012

Research ethics: Not just form filling

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by Soazig Clifton, NatCen

Research ethics is not just about securing approval from a committee – it’s about making sure your fieldworkers are prepared for anything, and that you can keep the promises that you make to participants.

At a workshop held by the NIHR School for Social Care Research (in collaboration with SCIE, SCREC and SSRG) in March, one of the organisers commented that the very words ‘ethics committee’ can make a researcher start rolling their eyes. I think that a lot of us can sympathise with this – we just want to get on with our research project and make sure it is successful, and can sometimes feel that the committee will somehow be out to thwart our well laid plans.

But submitting an application to an ethics committee is a valuable opportunity to really think about the ethical implications of your study design.

How will you balance making sure people are fully informed before they take part with not overloading them with information and putting them off entirely?

Do the potential benefits to society that will come from your findings outweigh any distress or discomfort that could come to those who take part?

These are some of the things you need to think about when you are preparing your ethics application and you will have the opportunity to discuss them in the committee meeting. It doesn’t stop there though.

As a quantitative researcher at NatCen Social Research, an important part of my job is to make sure that good ethical practice permeates the working culture of everyone involved in the project, at all stages. On our large-scale surveys we might have hundreds of interviewers working independently around Britain at any one point in time.

We typically conduct interviews in participants’ homes. The research topics can be sensitive, and the interviews are usually detailed. Participants are giving up valuable time to take part in the research. Among many other things they need to know that their contribution is important, that they don’t have to do anything they don’t want to, and that their answers will be treated confidentially.

Difficult questions

Is it ever ok to ask people about topics that are likely to upset them? What should an interviewer do if someone becomes upset?

What if an interviewer sees or hears something during the interview that gives them cause for concern about the participants’ safety? Or about the safety of others in their home? Is it ever ok to break the promise of confidentiality?

No easy answers

NatCen’s basic interviewer training covers all of the above points, and more. But there’s no black-and-white answer to these questions, and in fact there was much disagreement within the group of researchers who were at the ethics workshop. This is not surprising given that the audience represented a range of different professions within social care, carrying out different types of research. What’s important is that everyone involved in a research project understands where their own organisation stands on these issues. This means that no field worker is left having to make complex decisions unsupported, and importantly the welfare of participants is not left to chance.

It doesn’t matter whether you are a team of two carrying out ten research interviews, or have an army of fieldworkers interviewing 40,000 people: the principles are the same. Anyone conducting fieldwork needs to have the knowledge and confidence to deal with any difficult situations as they happen, and have the right support afterwards. So if you don’t already have answers to the questions above, it’s time to start thinking about them.

For information about the Social Care Research Ethics Committee: http://www.screc.org.uk/

For information about the Integrated Research Application System (IRAS): https://www.myresearchproject.org.uk/

For presentations from the NIHR School for Social Care Research’s Ethics workshop, including Soazig’s: http://www2.lse.ac.uk/LSEHealthAndSocialCare/events/SSCR-Ethics-Workshop.aspx

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May 14 2012

Book chapter by David McDaid on “Health Systems, Health, Wealth and Societal Well-being”

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“Health Systems, Health, Wealth, and Societal Well-being” – Assessing the case for investing in health systems

New book edited by Josep Figueras and Martin McKee includes a chapter by David McDaid on “The contribution of public health interventions: an economic perspective”.

Also includes chapters by Elias Mossialos and Irene Papanicolas.

This book is also part of a series of volumes by  the European Observatory on Health Systems and Policies.

The book itself can be viewed as a PDF here.

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May 11 2012

New paper: Reforming long-term care funding arrangements in England: International lessons

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by Jose-Luis Fernandez and Julien Forder

Abstract from journal paper

Ever since the failed 1999 Royal Commission, England has been attempting to reform its long-term care funding system. More than a decade later, significant changes to the means tested arrangements are yet to be introduced, whilst the pressure to achieve long-term reform mounts linked to increases in public expenditure and ever growing demand for better services. This paper examines the pros and cons of alternative options for reforming the English long-term care funding arrangements by examining the rationale for and consequences of the recent long-term care developments in Germany, Japan and France. In particular, the paper examines the implications of the reform options adopted in the different countries examined for equity and efficiency in the use of long-term care resources and for the sustainability of the long-term care system as a whole.

Full paper:

Fernandez JL, Forder J (2012) Reforming long-term care funding arrangements in England: International lessonsApplied Economic Perspective and Policy, 34, 2, 275-299.

This paper is part of a special issue on long-term care: Volume 34, Issue 2.

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May 11 2012

New paper: Measuring inefficiency in long-term care commissioning: Evidence from English local authorities

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by Francesco D’Amico and Jose-Luis Fernandez

Abstract from journal paper

Using a stochastic frontier approach, this paper explores efficiency in the commissioning of publicly funded social services among 148 English Councils through a six-year panel database (2002-2007), covering institutional and community care. Our estimates provide key policy evidence in a context in which optimization is critical both for social and financial purposes. Results suggest a slight decrease in the average inefficiency score, moving from 1.080 in the first year to 1.076 in the last year. Cost-output elasticity of institutional care is greater than those of community care services. Greater savings are obtained when the market is open to independent providers.

Full paper:

D’Amico F, Fernandez JL (2012) Measuring inefficiency in long-term care commissioning: Evidence from English local authorities, Applied Economic Perspective and Policy, 34, 2, 275-299.

This paper is part of a special issue on long-term care: Volume 34, Issue 2.

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May 10 2012

Mental health and physical health

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Michael Parsonage explores the impact on health outcomes and costs of mental and physical ill health. Michael is Senior Policy Adviser, Centre for Mental Health, and Visiting Senior Fellow, PSSRU.

About 70% of all NHS expenditure goes on the treatment and care of people with long-term conditions (LTCs) such as diabetes, asthma, arthritis, dementia and chronic cardiovascular disease (Department of Health 2010). More than 15 million people in England have one or more such conditions (Department of Health 2011) and multi-morbidity, i.e. the co-existence of two or health problems at the same time, is very common, particularly among older people. For example, multi-morbidity has an estimated prevalence of 60% among all people aged 55 to 74 (Fortin et al. 2005), rising to 83% among those aged 75+, including 58% with three or more conditions at the same time and 33% with four or more (Britt et al. 2008).

It is thus no exaggeration to say that multi-morbidity is the rule rather than the exception among people with poor health, but despite this the problem is given relatively little attention, whether in policy and service design or in published research. For example, it has been estimated that for every one article in the medical literature on multi-morbidity, there are 74 on asthma, 94 on hypertension and 38 on diabetes (Fortin et al. 2005).

The most common form of multi-morbidity is the co-existence of mental and physical ill health. Research evidence consistently shows that people with long-term physical conditions are two to three times more likely than the general population to experience mental health problems such as depression or anxiety, and a recent study jointly produced by the King’s Fund, the Centre for the Mental Health and the LSE has conservatively estimated that some 4.6 million people suffer from co-morbid mental and physical health conditions – about 30% of all those with LTCs (Naylor et al. 2012).

The mechanisms underlying the relationship between mental and physical health are complex and lines of causation undoubtedly run in both directions. Notwithstanding this complexity, two things are abundantly clear from the available evidence: co-morbid mental health problems lead to much poorer health outcomes for people with long-term physical conditions and they add significantly to NHS costs. To give a couple of examples of the adverse impact on health outcomes: mortality rates for individuals with co-morbid asthma and depression are twice as high as among people with asthma on its own (Walters et al. 2011); and patients with chronic heart failure are eight times more likely to die within 30 months if they also have depression (Junger et al. 2005).

Concerning the impact on NHS costs, evidence reviewed in the joint study mentioned above found that co-morbid mental health problems are typically associated with increases of 45-75% in the costs of physical health care for long-term conditions (Naylor et al. 2012). Increases of this order are observed across a wide range of LTCs and are based on costs measured after adjustment for the severity of physical disease. Much of the excess is associated with higher rates of acute hospital bed use.

Taking a mid-point of 60% for this cost mark-up, it may be estimated that at the aggregate level mental health co-morbidities cost the health service around £10.6 billion a year in additional spending on physical health care, or 10% of the total NHS budget. At the individual patient level, average cost per case is about £6,170 a year for a patient with a long-term physical condition and co-morbid mental health problem, compared with £3,855 a year for someone with a long-term physical condition on its own – a difference of £2,315 a year.

Much of this huge excess cost could be avoided by better management of the mental health needs of people with long-term physical conditions.  Two key requirements are:

  • First, better identification of co-morbid mental health problems. At present the great majority of cases of depression and anxiety among people with physical illnesses go untreated for the simple reason that they are not detected. One reason for this is that both patients and practitioners tend to focus on physical symptoms during consultations (“diagnostic overshadowing”). Even in acute hospital settings, most mental health problems go undetected, particularly in older patients.
  • Second, greater availability of evidence-based interventions for mental health problems, such as cognitive behavioural therapy (CBT), and the integration of these interventions within chronic disease management frameworks or rehabilitation programmes designed to support people in managing their physical condition. As an example of current provision, only 42% of cardiac patients are provided with rehabilitation and only 16% of these programmes have a psychological component, even though about half of all these patients suffer from anxiety or depression (British Heart Foundation 2011).

To attempt a very rough estimate of the overall scope for cost savings, a meta-analysis has found that psychological interventions for patients with physical conditions being treated in acute hospitals and other settings reduce health care costs per patient by about 20% on average (Chiles et al. 1999). As noted above, the average cost of care for a patient with co-morbid mental and physical illness is currently about £6,170 a year. A reduction of 20% in this cost thus implies an annual saving of £1,235 per patient, or – if applied to all 4.6 million patients with co-existing mental and physical health problems – a total potential saving of some £5.7 billion a year.

A separation of mental and physical health is hard-wired into the NHS as presently constituted. The evidence briefly reviewed above demonstrates that one consequence of this separation – namely, a common failure to identify and address mental health problems among people with long-term physical conditions – is not only leading to poorer clinical outcomes and lower quality of life but is also imposing a very large burden on the NHS in avoidable healthcare costs. Improved integration of services offers the prospect of better health at lower cost on a significant scale.

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May 8 2012

Workshop 29 May 2012: Using longitudinal data sources in social care research: insights, challenges and ways forward

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Hosted by
NIHR School for Social Care Research (SSCR)  
Longview

Using longitudinal data sources in social care research:  insights, challenges and ways forward

Workshop at the London School of Economics and Political Science

29 May 2012, 10.45-15.00

Room NAB LG 09

Please email sscr@lse.ac.uk to book a place.

Introduction

Longitudinal data offer powerful analytical insights to help answer many important social questions. Longitudinal data are collected by repeated observation and measurement of the same people, organisations, communities or other entities at a number of points over a period of time. Analyses of longitudinal data offer powerful and insightful approaches to understanding changes in society, and what might be driving that change. 

In terms of social care, some questions that could be addressed with longitudinal data could include:

  • How are the needs for and preferences about social care and support changing over time?
  • Are there changes in levels or patterns of use of social care?  And, what factors are influencing these changes?
  • What are the consequences of social, economic or demographic trends for social care need, demand and utilisation?
  • Are there associations between care and support arrangements for individuals and the outcomes that they and their carers experience?
  • How is the social care workforce affected by different factors, for example in relation to mobility and stability?
  • Do the characteristics of the workforce affect the quality of care and the quality of user outcomes?
  • What are the projected future costs of care and support? What financing mechanisms might be suitable in future years?

Britain has a very strong history of longitudinal studies. However, the approach has generally not been widely applied to research in the social care sector.  

Longview and the NIHR School for Social Care Research are jointly organising this workshop for people interested in learning about and further developing the use of longitudinal approaches in social care-related research.

Who would find the day of use? 

Researchers, research commissioners, policy makers, and social care commissioners, managers and practitioners who are interested to develop further their understanding and use of longitudinal methods.

The day is organised in two halves. The morning introduces longitudinal data analysis, and the afternoon takes the discussion further to examine the use of this method in social care research. You are welcome to attend either the full day, or from lunch onwards, depending upon your level of current knowledge. A programme for the day is over the page.

Aims of the workshop:

  1. To introduce longitudinal research, some of the associated challenges and examples of its application to highlight its analytical power.
  2. To increase awareness of the potential of longitudinal studies in social care research.
  3. To bring together a diverse audience to explore the potential contribution of existing longitudinal data sources to help understand questions about social care, such as possible variations in social care needs between age cohorts.
  4. To bring together established longitudinal studies researchers with those knowledgeable about social care and social care research.
  5. To identify barriers to the best use of longitudinal data and its application to social care practice and policy discussions.
  6. To begin a discussion about increasing the use of longitudinal research in the context of social care.

Programme

10:45  Arrival and registration

11:00  Welcome and introduction

Professor Martin Knapp, Director of NIHR SSCR

Professor Tom Schuller, Director of Longview

11:20  Introduction to longitudinal studies – Stephen Jenkins (Professor of Economic and Social Policy, LSE)

This session will cover:

  • The principles of longitudinal research
  • Key issues and conceptual and methodological challenges
  • The kinds of questions that longitudinal studies can address
  • Longitudinal studies compared to other methods, such as cross-sectional studies.
  • Discussion

12:00  Examples using longitudinal data sets in Britain – Barbara Maughan (Professor of Developmental Epidemiology, Institute of Psychiatry, King’s College London)

This session will cover:

  • The main longitudinal data sets in Britain of relevance to social care studies
  • Examples of their application
  • Information on how to access the data sets
  • Discussion

12:45 Lunch

13:30 Examples of longitudinal studies in social care

  • Constructing longitudinal workforce analyses using routinely collected data: challenges and possibilities – Shereen Hussein (KCL)
  • Using longitudinal data to assess long-term care funding arrangements – Jose-Luis Fernandez (LSE)

14:30 Building the longitudinal evidence base in social care

  • Opportunities for applying longitudinal studies to social care and some questions we might like to answer using them.
  • Challenges of applying longitudinal studies to social care.
  • Discussion

15: 00 Close

Longview is an independent thinktank whose primary purpose is to promote the value of longitudinal and lifecourse studies. It does this through organising events for researchers, policy-makers and practitioners, generally in partnership with other organisations; through specific consultancy and technical advice; and through other activities such as improving the visualisation of data.  In the context of an ageing society, this includes thinking about the shape of the lifecourse, i.e. the ways in which we conceive of ages and stages. Longview has also developed a research society, the Society for Longitudinal and Lifecourse Studies, and a journal, Longitudinal and Lifecourse Studies.

The NIHR School for Social Care Research was founded in May 2009 to be a focal point for advancing the evidence base to improve adult social care in England. The School’s goals are to: i) commission and conduct high quality research; ii) provide the focus for social care research within NIHR and promote the general development of social care research; iii) develop methodological rigour and broaden the methodological repertoire, iii) consult widely on research priorities; iv) contribute to ongoing efforts to build social care research capacity and improve research awareness; v) disseminate findings and support other knowledge transfer activities. Our portfolio of work includes about 40 research papers, methodological and scoping discussion papers, reports of social care research, and outputs from several events we have organised.

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May 4 2012

Moving people out of borough: at what cost?

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Marya Saidi asks what is the cost to the individual of moving people out of borough.

Local news has been awash recently with talk of ‘social cleansing’. With funding cuts looming and the diminishing number of affordable properties, some London councils can no longer afford to house their tenants currently on housing benefit. One solution to this is relocating individuals, sometimes entire families, to neighbouring counties, where admittedly house and land prices may be cheaper.

However what is the cost to the individual?

A news article this past week has reported that some London councils plan to relocate homeless people to the Midlands. Homeless people are a cohort of extremely vulnerable people and are often suffering from mental health problems (Folsom & Jeste 2002; Scott 1993).

Historically, and more specifically about mental health in this case, the advent of deinstitutionalisation in the past few decades brought increased pressure on local social services to provide accommodation within the community, with demand exceeding supply and giving way to the flourishing of the private sector. However, some of these private facilities are some distance from the public authorities that are purchasing places in them, which may not be in the long-term interests of the residents (Poole et al. 2002). People placed in out of area treatments (OATs) are disadvantaged by dislocation from their family and community and loss of continuity of services from their areas of origin (Killaspy et al. 2009). 

Drawing from my PhD study on specialist housing services for people with mental health problems in England, interviews with service users and service managers have revealed the detrimental effect of moving people out of borough and away from their communities.

Of the 86 service users interviewed for this study and currently living in specialist housing services such as care homes and supported living schemes, 42 said that the area where they were now housed was not where they had spent most of their lives. People who had been displaced were more likely than their counterparts to say that the main barrier to them seeing their families and friends was because they didn’t live nearby; they were thus much less likely to have maintained contact with them. On the other hand, people who were living in their home area were much more likely to have chatted to their friends in the last two weeks.

These findings do suggest that placing someone out of area can sever peoples’ ties with their communities, as well as with their families and friends.

Certainly, people with mental health problems are one of the most socially excluded groups in society (Social Exclusion Unit 2004). However one may wonder about the mental health, well-being and social inclusion of people who will potentially be displaced due to funding cuts.

Research is still ongoing. To learn more, email Marya Saidi (m.saidi1@lse.ac.uk)

References

Folsom D, Jeste D (2002) Schizophrenia in homeless persons: a systematic review of the literature, Acta Psychiatrica Scandinavica, 162, 6, 404-413.

Killaspy H, Rambarran D, Harden C, Fearon D, Caren G, McClinton K (2009) A comparison of service users placed out of their local area and local rehabilitation service users, Journal of Mental Health, 18, 2, 111-120.

Poole R, Ryan T, Pearsall A (2002) The NHS, the private sector, and the virtual asylum, British Medical Journal, 325, 349-350.

Scott J (1993) Homelessness and mental illness, British Journal of Psychiatry, 162, 314-324.

Social Exclusion Unit (2004) Mental Health and Social Exclusion Social Exclusion Unit Report. Retrieved from http://www.socialinclusion.org.uk/publications/SEU.pdf.

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May 3 2012

Looking Westwards

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Dr Adam Oliver askes ‘can the NHS learn anything from Kaiser Permanente?’

A view, shared by many, is that competition, of one form or another, will improve outcomes and quality within the NHS. Moreover, when one thinks of competition in health care, one may think of the United States, which might, by extension, make one think of Kaiser Permanente. Like the NHS, Kaiser Permanente is essentially a health maintenance organisation (HMO) in that it combines its purchaser and provider arms into a single organisation; indeed, it is one of the largest integrated health service networks in the US. Therefore, following a somewhat circuitous route, we might ask ourselves the question: can the NHS learn anything from Kaiser Permanente? Given the frequent transatlantic visits involving NHS, Department of Health and Kaiser Permanente staff, it seems clear that many people believe that the answer to the above question is affirmative.  

Kaiser Permanente is a non-profit organisation, officially founded in 1945, but owing its earlier origins to an insurance consortium formed by several large Californian construction contractors to meet worker compensation claims. It derives its name from the integration of the Kaiser Foundation Health Plan and Kaiser Foundation Hospitals, with independent physicians group practices called Permanente Medical Groups. To the public, the health plan, which provides insurance, and the hospital and medical groups are perceived as a single organisation. Kaiser Permanente doctors are salaried and own shares in the organisation, and specialists cannot work outside the system. The Health Plan has approximately nine million members, about six million of whom are Californian residents, with the remainder scattered across eight other states and Washington DC.    

A few years ago, there was a spate of articles that focussed on comparing the NHS and Kaiser Permanente, the most famous (some might argue infamous) of which was written by Feachem et al. (2002). Kaiser Permanente is considered to be a ‘working class’ system; the NHS, as a ‘national’ system, inevitably covers a wider spectrum of the population, from the very poor to the very rich, which makes meaningful comparisons of the two systems difficult. Nonetheless, Feachem et al. made a not inconsiderable effort to control for the different profiles of the two populations, by adjusting per capita costs for age, socioeconomic status, and the fact that the NHS covers the very poor. The authors also adjusted the incomes of Kaiser Permanente doctors down so that they were on a par with those earned in the NHS, under the rationale of equalising input costs across the two systems. This latter adjustment is questionable, because performance may in part differ across the systems precisely because of differential salaries.

Be that is it may, the main finding unearthed by the authors was that Kaiser Permanente offered better value for money than the NHS, principally because the use of beds was much higher in the NHS; specifically, the NHS used four times the number of acute beds per 100,000 population per year. These bed use differences, it was argued, were caused by higher NHS admission rates and lengths of stay, although in this respect one ought to tread cautiously, because the NHS may be faced with disproportionately more elderly patients who cannot so easily return home after hospital admission, and NHS data sets do not in any case always distinguish between time spent in acute and community hospitals. Despite the quite legitimate concern that a comparison of the two systems is akin to comparing a strawberry to a banana, it is probably fair to conclude that Kaiser Permanente manages its acute beds relatively well, which is a finding that should not be sniffed at, particularly when it is remembered that hospital stays tend to be the most expensive component of health care systems and that their efficient use may free up considerable resources for other services. Feachem et al. attributed Kaiser Permanente’s performance in this respect to a number of factors, including good, integrated, co-ordinated care between hospital and outpatient settings, an impressive use of information technology (including electronic health records), and the pressure to be responsive to patients, or risk losing them to other health plans. 

There have been other studies. Ham et al. (2003) largely corroborated the Feachem et al. study, although they concluded that differences in admission rates are less important than length of stay when accounting for overall differences in bed day use. They also emphasised how well Kaiser Permanente apparently integrates inpatient and outpatient care, how patients are facilitated to return to their home environments (e.g. by being taught how to dress following orthopaedic procedures, and to properly take their medications), and how a greater concentration of specialists and skilled nurses can help people to leave hospital quicker. Ham et al. also noted the importance of the threat of exit (i.e. enrolees leaving the plan) serving as a motivator to be responsive to patients, which is something that is mostly alien to the institutional structure of the NHS (and may bring harms in terms of continuity of care, and/or national equity objectives, as well as benefits). Others are less enamoured with Kaiser Permanente. Talbot-Smith et al. (2004), for example, claimed that the costs of the system are actually substantially higher than those of the NHS, even though, on the whole, it covers a younger, healthier population.

If we must look westwards from this cold, wet, green and pleasant land, need we necessarily look towards California (leaving aside consideration of some pleasant policy tourism)? We could instead look towards a different type of Kizer – Kenneth Kizer, who, in the mid 1990s led a reform of the US Veterans Health Administration (VHA). The VHA publicly both finances and provides health care for the veterans of the US armed forces. Institutionally, organisationally, and culturally (e.g. with respect to an ethos of public service, and with a traditional absence of demand-side competition), the VHA closely resembles the NHS; more closely, probably, than either resemble Kaiser Permanente. Kizer, by improving planning, performance management, resource allocation and information technology (among other things), oversaw the transformation of the VHA from a widely castigated service, to arguably the best performing sector of American health care (Oliver 2008). Useful lessons might be learnt from the tale of the VHA, but that’s another story. 

References

Feachem RGA, Sekhri NK, White KL (2002) Getting more for their dollar: a comparison of the NHS with California’s Kaiser Permanente, British Medical Journal, 324.

Ham, C, York N, Sutch S, Shaw R (2003) Hospital bed utilisation in the NHS, Kaiser Permanente, and the US Medicare programme: analysis of routine data, British Medical Journal, 327.

Oliver A (2008) Public sector health care reforms that work? A case study of the United States’ Veterans Health Administration, Lancet, 371, 1211-1213.

Talbot-Smith A, Gnani S, Pollock AM, Pereira Gray D (2004) Questioning the claims from Kaiser, The British Journal of General Practice, 54, 415-421.

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May 2 2012

SSCR Scoping Review: The role of the third sector in delivering social care

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by Helen Dickinson, Kerry Allen, Pete Alcock, Rob Macmillan and Jon Glasby
ESRC Third Sector Research Centre and Health Services Management Centre, University of Birmingham

Third sector providers have been important in the delivery of social care services for some time. Long before the advent of the ‘contract culture’ that started to emerge in the 1980s, third sector organisations have been involved in the delivery of what we would today define as social care. But this role is changing as the personalisation agenda takes hold and there is a push for closer integration between health and social care services within a context of constrained financial resources.

Although a number of researchers have written on the subject of social care delivery by third sector agencies, there is no single account of the state of knowledge in the area or a clear account of the research agenda for the future. This review was designed to address this and is organised around the following objectives:

  • to review the significant contributions to the academic policy and practice literatures in order that we might establish the existing state of knowledge in terms of the third sector in delivering social care in England;
  • to conduct semi-structured interviews with a number of key contacts to verify challenges identified from literature and assist in horizon scanning; 
  • to identify the research agenda, including an indication of the main questions to be studied and the types of studies that might be needed to address them.

This was not a formal systematic review of the literature, but the literature review sought to be as comprehensive as possible in drawing together the significant contributions to this area. The 1990 NHS and Community Care Act brought far reaching changes for social care, and given that this point in time meant such significant change for social care and consequently third sector organisations operating in this area, we start our review at 1990 and have only included items which have been published since this date.

A search was conducted of relevant databases and a snowballing technique adapted alongside a call out to the Voluntary Sector Studies Network requesting relevant materials. In total 91 articles were identified that met the inclusion criteria. Items were included where they focused on English adult social care services and they made some mention of the role of third sector organisations. Items were excluded from the review where they did not focus on social care or the third sector or where they were principally concerned with children’s services.

The literature review was complemented by eight semi-structured interviews with leading individuals from academia, policy and practice. These interviews were designed to test out existing findings but also to complement the largely retrospective research base with some prospective perspectives of what the future challenges would be for third sector organisations involved in delivering social care.

Findings are set out in the review in relation to the themes of: approaches to research in third sector and social care; the distinctiveness of the third sector in delivering social care; relationships with commissioners of social care; and the role of volunteers. These were the main areas of discussion within the literature, although the evidence base relating to these different themes is far from conclusive, with these providing a basis for debate rather than robust evidence.

Many of the items we retrieved as part of this review were not robustly designed research projects in good quality peer-reviewed journals, with those retrieved being either pieces from the trade press, policy documents or pieces published by particular bodies with an interest in this area. Even when articles appeared in academic journals they were often discussion pieces or did not go into much detail as to what process had been gone through to generate the evidence set out in the article.

In general we found a limited range of methodological approaches within existing research studies and a failure to theorise key concepts and critically challenge previous work. Clearly there were exceptions to this rule and there were some well-designed and in depth pieces but on the whole this is not an area which seems to have suffered from overresearch.

The overall conclusion from this review is that there is a relative lack of robust research relating to the role of third sector organisations in delivering social care services. This is despite the long history of this role and its growing, and changing, importance in recent and current policy contexts.

There are significant gaps in the approaches to researching the third sector and social care. There is a theoretical lacuna in the literature. There is a need to clarify the different organisational forms involved in the delivery of social care and to explore the different roles that third sector organisations have played in delivering services and campaigning.

There is also a significant empirical lacuna – in particular there needs to be a better mix of research methods employed in investigating this area. The use of large-scale quantitative data sets in this area has been rare. However, these are needed to provide a quantitative picture of the current scale and spread of third sector organisations involved in social care at a national and regional level.

Comparative study of the third sector is required in order to determine the degree to which the third sector is distinctive across a range of different parameters. There has also been little research on the use of volunteers in delivery of social care within third sector organisations and the particular (added) value that volunteers bring. Qualitative research with volunteers and case study analysis of their involvement in delivery of services could provide important new evidence about the potential for, and the challenges of, voluntary contribution.

Read the full scoping review (PDF).

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May 1 2012

Perceptions of health care access in Europe: How universal is universal coverage?

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by Jonathan Cylus1,2 and Irene Papanicolas2

1 European Observatory on Health Systems and Policies, London
2 LSE HealthLondon School of Economics and Political Science, London

The past decade has witnessed a growing interest in the ability of health systems to protect citizens from the financial consequences associated with ill health and the use of medical care. In order to improve financial protection and access to care the WHO World Health Report 2010 firmly emphasizes that health systems move towards universal coverage of their populations. Of all regions, Europe has shown the most commitment to the goal of universal coverage. However, not all Europeans may feel as though they are able to access care if in fact they should need it. It is therefore important to investigate how the citizens of different European countries perceive their access to health care in order to better understand who these individuals are and what role different systems can play in providing better access to care.

To this end, we have been analysing data from the European Social Survey (ESS) 2008 - a cross-sectional multi-country survey designed to capture the attitudes, beliefs and behaviours of Europeans in over 30 countries. The ESS 2008 collects data on household income, subjective health status, age, employment status, and perceived ability to access health care services if the need should arise. Using multinomial logistic regressions, we estimate the odds of an individual who feels that they are unable to access care also reporting that they are poor, sick, elderly or unemployed.

Across Europe, we have found that individuals who report it being “very difficult to get by” on their current income are much more likely to also feel that it would be very difficult for them to be able to access care if they needed it in the next 12 months, regardless of model specification.  In one model specification, individuals in the poorest income decile were estimated to be 4.5 times as likely (p<0.001) as individuals in the wealthiest income decile to feel as though their ability to access care if needed would be highly unlikely, as opposed to highly likely. Individuals who reported their health to be very bad were also significantly more likely to be very worried about health care access. Using an alternative model specification, we have identified and ranked countries including Cyprus, Portugal, and Croatia as having statistically significant likelihoods of a positive association between poverty and inability to access care. 

This research is currently on-going. Despite commitments to reduce inequalities in access, we are finding that the poorest and sickest individuals in Europe are still the most likely to feel that they would not be able to access care they need. This is of great concern for those designing health care policies and highlights the need to focus on providing access to care for all individuals regardless of ability to pay, health status, age or employment.

To learn more about this research, email Jonathan Cylus (J.D.Cylus@lse.ac.uk).

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