Globalisation, Markets and Healthcare Policy

Redrawing the Patient as Consumer

Jonathan Tritter, Meri Koivusalo, Eeva Ollila, Paul Dorfman

• Publisher: Routledge
• Year: 2009
• ISBN:
  9781134115747
• Edition: 1
• Topic: Médecine
• Subtopic: Prestation de soins de santé

Although the last two decades have seen the healthcare systems of most developed countries face pressure for major reform, the impact of this reform on the relationship between empowerment, consumerism and citizen's rights has received limited research attention. Globalisation, Markets and Healthcare Policy sets out to redress this imbalance.

This book explores the extent to which globalisation and commercialisation relate to current and emerging health policies. It also looks at the implications for citizens, patients and social rights, as well as how policy making interacts with the interests of global and European trade and economic policies. Topics discussed include:

• How the impact of globalisation on health systems is apparent in the influence of international actors and European policies.
• How the impact of globalisation is mediated by national priorities and policies and is therefore reflected in diverse influences.
• How commercialisation of health is presented as benefiting citizens and patients but has the potential to undermine the aims and values inherent in health systems.
• How the role of citizens' interests, social rights, patient's rights and priorities of patient and public involvement need to be separated from commercialisation, choice and consumerism in health care.

Essential reading for policy makers and students of public policy, politics, law and health services, Globalisation, Markets and Healthcare Policy will also appeal to those interested in patient involvement international healthcare, international relations, trans-national organisations and the EU.

1 Analysing patient and public involvement and health policy

Recent health service reforms in Western countries emphasise public and patient involvement (Vallgårda et al. 2001; Vos 2002). The increasing participation of users in decisions around treatment, service development and evaluation has been central to this process. The consequences are becoming clear as relationships between the state and citizens and between the public, patients and organisations within the healthcare system are redrawn. This shift in health policy has generated significant debate between policy makers, within government and the media.

What is patient and public involvement?

Patient and Public Involvement (PPI) is about creating a constructive dialogue to reshape the relationship between patients, healthcare professionals and the public. It has the potential to act as a catalyst for more widespread cultural change. Involvement activities should create an environment that enables issues to be raised by patients and the public and to be fed into strategic and operational decisions in order to change policy and practice, and at an individual level ensure that patient views and experiences have an impact on decision making regarding treatment, the training of health professionals and the generation of research evidence. According to the UK Department of Health (2008a) members of the public should have a substantial role in shaping the care system’s development, and patients and service users should be kept well informed of clinical processes and decisions.

Building successful relationships between those that use or receive services, those who commission or plan services and those who manage or deliver services is essential to ensure efficient and effective service provision that meets the needs of service users. In healthcare the promotion of patient-centred or holistic care seeks to ensure that a patient’s needs and views are central to decisions about treatment and care. In a publicly funded health system the need to ensure accountability to those who fund services (the taxpaying public) and the political necessity of satisfying voters informs the opportunities that exist for patient and public involvement. These different ways of framing various accountability relationships assume that the quality of health services is inexorably linked to meeting the expressed needs of both patients and the public; responding to the views of both individual service users and the collective population.

Theories of user empowerment are often traced to Arnstein’s (1969) classic article setting out a ‘ladder of citizen engagement’. Her work has been applied and reinterpreted in a number of ways and indeed recent criticisms have focused on the polarisation between the interest of citizens (service users) and public sector managers inherent in her model (Tritter and McCallum 2006) rather than exploring the opportunities for partnership and the identification and promotion of a common agenda (Moore 1995).

An urban redevelopment specialist, Arnstein developed and illustrated her typology of citizen participation in decision making with examples from the US Department of Housing and Urban Development Modern Cities programme. She suggested, however, that her model was more broadly relevant: ‘The underlying issues are essentially the same—“nobodies” in several arenas are trying to become “somebodies” with enough power to make the target institutions responsive to their views, aspirations, and needs’ (Arnstein 1969: 216).

Arnstein suggests a ‘Ladder of citizen participation’ but the primary measure of participation is power to make decisions and seizing this control is the true aim of citizen engagement and the extent of such power differentiates between the different rungs of the ladder. Thus, complete citizen control is defined as the top of the ladder. Moving from the lower rungs labelled manipulation and therapy through informing, consultation and placation to the top three steps, partnership, delegated power and citizen control, demonstrates citizen power. Lower rungs are differentiated by the constraint of citizen power and forms of participation that does not necessarily influence decision making.

In healthcare the two categories of patients and the public tend to be defined only vaguely. The public is often seen to represent or serve as a proxy for potential patients while at other times it is seen as synonymous with citizens, taxpayers and voters. In a UK Department of Health Report, public involvement is defined as ‘the participation of members of the public or their representatives, in decisions about the planning, design and development of their local health services’ (Farrell 2004: 66). For Coulter the differentiation between patients and the public is more significant: ‘All of us are both patients, or potential patients, and citizens, but a distinction can usefully be made between what we want when we are using the health service and what we hope for as citizens or taxpayers’ (Coulter 2006: 38). This distinction is partly around the tension between engaging with individual patients and engaging with people as part of a collective, citizens, to whom public services are accountable. Reflecting on this tension within the UK Coulter goes on to observe

Involving citizens means opening up debate about the pattern and nature of service provision, while engaging patients involves tackling the clinical agenda and changing the culture of care … while considerable efforts have been expended on consulting local people about planned service developments and securing lay membership on a raft of committees and policy-making bodies, progress in respect of involving patients in their care has been disappointingly slow.

(Coulter 2006: 39)

The category of patients typically also includes a range of other collective terms reflecting those who are directly affected by health services, including carers, service users, consumers of services and lay people. UK Department of Health defines patient involvement as ‘the full participation of patients and their carers in their own care and treatment. Patient involvement can also be at the level of service delivery and quality monitoring’ (Farrell 2004: 66).

A further complicating issue relates to time. How long does an individual retain the definition of patient? An individual who receives a prescription for a two-week course of antibiotics for a chest infection is no longer a patient in the sense of being actively treated a month later. A patient who has a hip replacement will expect to drive within four to six weeks and feel normal after about three months. A patient who has a lumpectomy for breast cancer should be able to resume regular activities six weeks after surgery. A patient who is diagnosed with asthma will typically manage their condition with inhalers. Of these examples how many would still be considered ‘patients’ two years after the completion of their treatment?

The person with cancer may continue to think of themselves as a cancer patient or living with cancer long after an initial diagnosis and treatment, even if their contact with health professionals is limited to an annual check-up. Similarly, a person with a hip replacement continues to be aware of the surgical intervention. Some people with long-term or chronic conditions reject the label of patient despite maintaining an ongoing relationship with healthcare professionals to aid the management of their condition.

The overlapping categories of patient and the public also incorporate a second order definition that relates to the intensity and regularity of contact with a health system. Further, being a cancer patient provides a particular expertise about cancer services but does not imply any broader general knowledge of local health services. The relationships between people, the health system and those who provide healthcare reflect the different types of potential partnerships and therefore different kinds of involvement.

Different categories of patient and public involvement

In the UK, the Department of Health’s Patient Partnership Strategy laid out a series of different kinds of ‘partnerships’ with distinct aims to:

[P]romote patients’ involvement in their own health and healthcare as active partners with professionals; enable patients to have information about their health and healthcare and to make informed decisions about it if they wish; involve users and their carers in improving service quality; and involve the public as citizens in health and health service decision making processes.

(Department of Health 1999a: 2)

These different partnerships reflect to an extent the distinction between patients and the public as well as the type of involvement. More explicitly, there are five distinct types of patient and public involvement (see Table 1.1).

Patient participation in treatment decisions is one type of user involvement but as a form of patient-centred care it is not innovative. Similarly, involvement in service development, typically a consultation exercise with a local community, has a long history in the NHS and more broadly around the world. The evaluation of services by users has become common practice. Information, in England can be obtained from, for instance, the Patient Advice and Liaison Service (PALS) and from Non-Executive Directors (and Citizen Governors in Foundation Trusts) that are all important avenues for ensuring that the views of the public and patients can inform strategic and operational decision making. Two final categories of user involvement relate to participation in research and teaching.

Clearly, there are interactions and linkages between the different categories of user involvement. Service development may have a direct impact on the range of individual treatment options that exist and service evaluation may identify inequities in access that affect individual participation in treatment. User participation in setting a research agenda may have an impact on shaping provision and service organisation, and therefore future options for treatment (Involve 2003).

A second key distinction to draw between types of PPI is whether they are direct or indirect (Tritter et al. 2003). Direct involvement occurs when people take part directly in decision making. This includes determining what

Table 1.1 Types of patient and public involvement

services are offered to a particular population, improvements needed to the quality of services, and how resources are used in relation to prioritisation.

There are a variety of methods for involving people directly in decision making; for example, by having patients or members of the public on steering groups and committees at different levels within an organisation. Alternatively, organising ‘User Involvement Groups’ to help advise on policy development and decision making within a healthcare organisation is a common approach. These groups typically have members drawn from professional groups, support groups and service users and they can provide a useful forum for bringing together different experiences, perspectives and expertise.

By contrast, indirect involvement often entails information gathering by health professionals and clinical staff in order to inform service delivery and development. While the views of people are sought, health professionals and clinical staff make the final decisions. One of the difficulties with indirect engagement is that health professionals and managerial staff can choose to ignore feedback from people if they do not think it is appropriate. As a result, those who have contributed to the process can feel frustrated. However, by providing clear feedback about how and why decisions have been taken, these feelings may be reduced. The vast majority of involvement in healthcare is indirect involvement where the power to make a decision is reserved for those with formal responsibility; an approach that is far lower on Arnstein’s ladder (Arnstein 1969).

As well as the five types of user involvement suggested earlier in the chapter (treatment decisions, service development, evaluation of services, education and training or research) and the distinction between direct and indirect approaches, a further distinction can be drawn between those activities that are aimed at individuals and those that are premised on collective participation (see Figure 1.1). For individuals, an example of direct involvement might be choosing to have a particular procedure, or choosing not to have chemotherapy. Collective direct involvement might be involving a breast cancer support group in designing a new breast cancer clinic in a local hospital. In each of these cases the involvement activity includes the power to participate in making the decision.

Individual Direct	Individual Indirect
Collective Direct	Collective Direct

Figure 1.1 A matrix of involvement

Examples of indirect involvement at the individual level include making a complaint or providing input about a positive experience of care. At a collective level indirect involvement might be the comments by a patient support group about their recommendations for service improvement in reaction to a draft report. In all these cases the involvement activity generates information, but the decision to act on the information, and indeed what aspects of the information to take into account, is retained by the health professional or manager.

Proactive and reactive involvement

A final element of this conceptual model of involvement relates to the extent to which involvement activities are prompted. Many health organisations have recognised that developing and supporting service user groups is beneficial in generating relevant intelligence on service design, and helping to target resources and services to the needs of the local community. Such groups, whether they are health or citizen panels (Somerset Health and Social Care NHS Trust 2008; Davies et al. 2006), or an involvement forum (London Ambulance Service 2004), will operate in different ways. The health organisation is likely to seek service user’s views on plans or documents and send them to the group for review and feedback. Other organisations may ensure that the service user group has representatives on the board of the organisation and that there is a standing agenda item at every meeting that creates an opportunity for the group to raise issues that require a response (Avon, Somerset and Wiltshire Cancer Services 2006).

Whatever methods are used and whichever type of PPI is employed, it must relate to both the aims of the activity or system of involvement and the type of people involved.

Are complaints jewels to be treasured?

Sometimes complaints are seen as an involvement mechanism and a type of patient and public involvement. Usually complaints are collected at a central point, analysed and coordinated. Complaints can identify particular aspects of a service, including individuals, that are underperforming or that need to be addressed. Complaints, however, are unrepresentative of dissatisfaction and do not necessarily capture the most serious grievances or instances of inappropriate practice (Mulcahy and Tritter 1998). This makes them a poor tool to monitor services.

While complaints may be a form of user activism (Mulcahy and Lloyd-Bostock 1994) they can only form part of indirect involvement as they are framed in terms of collecting information rather than participation in decision making. The action taken in response to a complaint, usually, is made without the participation of the complainant. Complaints also tend to emphasise an individual relationship and tend to be single instances. They are therefore only limited opportunities for developing a partnership with a community

Lay expertise

All of these categories of user acknowledge specific expertise distinct from that available to health professionals and managers. While this has been stressed most strongly in relation to chronic illness and the promotion of self-management it also underpins the increasing stress of patient participation in treatment decision making and has been labelled by others as the ‘autonomous patient’ (Coulter 2002) or the ‘resourceful patient’ (Muir Gray and Rutter 2002).

Despite this there is much contestation of the nature and extent of such expertise (see, for instance, Shaw and Baker 2004). In launching the Expert Patient programme the Chief Medical Officer of England Professor Sir Liam Donaldson said,

It has long been recognised that people with chronic diseases have considerable knowledge and experience of their own illness. Research has shown that with proper training this can be turned into practic...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• List of illustrations
• Ackowledgements
• Introduction: the basis of the book
• 1 Analysing patient and public involvement and health policy
• 2 Health policies, health systems and healthcare reforms
• 3 From patients to consumers
• 4 Globalisation and global policy influences: mapping the big picture
• 5 The European Union: trading in healthcare or building a healthier Europe?
• 6 England: choice, voice and marketisation in the NHS
• 7 Sweden: a market orientation to the welfare state
• 8 Finland: commercialisation in the context of decentralised service provision
• 9 Healthcare reforms, user involvement and markets in England, Finland and Sweden: are there common concerns?
• 10 Any road will do if you don’t know where to go: conclusions and future prospects
• Bibliography