There is a shift in the role patients play in their healthcare. While the body of the patient has always been central to care, the place of patient cognition – the exercise of opinion and will – is a current focus. There has been a shift: from a passive view of patients as undiscriminating recipients of care defined by others (‘patient centred’ or not); to routine disclosure of information that affects them and their participation in decision making; through to encouraging discriminating consumers who are actively involved as care recipients with the power to choose the services they prefer; and finally to the notion of the patient/consumer as a co-producer of healthcare. Such recipients are not only involved in decision making about their care, but also actively assist and collaborate in designing the product that they consume. The emerging importance of co-produced healthcare is borne out by reference to the concept in numerous chapters in this book (see particularly Mooney, Chapter 13; but also Claridge & Cook, Chapter 4; Kerosuo, Chapter 5; Willis, Dwyer & Dunn, Chapter 6; and Jorm, Banks & Twohill, Chapter 12).

The place of patients/consumers of healthcare is moving from that of stakeholders with the limited power of ‘being satisfied’ or not with the care they receive to ‘prosumers’ of care. Coined by Alvin Toffler in 1979, the word ‘prosumer’ is gaining currency in many industrial and manufacturing circles. This term links the idea of consumer with that of producer. It encompasses the added consumer power of defining the product through consulting and negotiating with healthcare professionals. This suggests that the range of meanings inherent in patient-centred care is related to those who have the power to define the type of healthcare available, offered, accepted and delivered. That is, patients are becoming more involved, not just in accepting what is offered, but in determining the care they prefer and the manner in which it is provided. Further, the role of citizen in healthcare is becoming prominent, not only as the potential recipients of healthcare services, but also from the democratic basis that all citizens (not just service users) should have a say in how their services are designed and delivered.

This patient/consumer/prosumer prominence has far-reaching implications for the way the healthcare system, services and programs and clinical processes are planned, delivered and evaluated. As the conceptualisation of active patients who participate in their care moves from those who ask ‘lay questions’ to recognising that consumers themselves have expertise in managing their own diseases, illnesses or conditions, their relationships with health professionals must change concurrently. This is desirable, particularly since the evidence suggests that active participation is strongly associated with better patient outcomes. Thus the power dynamics between clinicians and patients will continue to become more complex and less privileging of the clinical professional as the final arbiter of what is appropriate care. This in turn has implications for what kinds of people will populate health, given we are talking about a new type of work involving new types of workers – professionals who besides enacting their expertise, are capable of acknowledging care limitations, exhibiting humility, accepting others’ views, and embracing others’ expertise.

Against this background, in this chapter we discuss:

The place of patients and the public generally in healthcare is changing. Lay people are taking on more prominence, whether as individuals interested in managing their own chronic conditions; as members of active stakeholder groups who express growing legitimate interests in the quality, outcomes and experience of specific strands of healthcare; or as patients (or family members) becoming involved in the investigation of their (relative’s) unexpected treatment outcomes. These interests and forms of participation need to be acknowledged and incorporated within an evolving concept of ‘the healthcare product’. According to Irwin & Richardson (2006) patient-focused care includes four broad areas of intervention: communication with patients, partnerships, health promotion and physical care (i.e. medications and treatments). In their view, patient-focused or patient-centred care is constructive in achieving the ‘three Cs’ of care, namely communication, continuity and concordance. While this model seeks to counterbalance existing technology-based, disease-centred models (Irwin & Richardson 2006), it does not go so far as to envisage the potential for consumer involvement in the (re)design of healthcare services and treatment practices.

In effect, ‘taking the consumer into account’ constitutes a spectrum of engagement, ranging from clinicians and health services acting as experts in healthcare responding to patients’ biological needs and preferences, to lay consumers with the power to pass judgment on the quality of care and hence the right to choose services and treatments, to ‘prosumers’ co-producing healthcare and practice improvements through collaboration with clinicians in (re)defining the product they desire to consume. The prosumer concept describes a rapidly evolving model of patient-centred care (Mansell et al 2005) whose intent is to increase the participation of patients in decisions within the medical–clinical encounter, and of the public in decisions about healthcare in general (see Mooney, Chapter 13). The word epitomises the rapidly developing view of the patient/consumer/prosumer⁷ being a partner in producing healthcare processes and outcomes.

Consumer participation is being supported by a range of policy instruments, particularly at the medical-encounter level. Two policy instruments are prominent that reflect the changing place of the consumer, namely informed consent and open disclosure. Open disclosure is used as an example here and reference is made to informed consent.

First, informed consent is defined as a patient-driven decision-making model that applies, besides an evidence-based decision-making model, a public-participation model (Carey-Hazell 2005). Recognising the limited scope of existing informed consent policy, a recent report recommends extending informed consent from advice about and negotiation concerning medical risk (the epidemiological chance of surviving a treatment in conjunction with the patient’s condition), to also covering clinical risk (Who will be operating on me today? Who will be supervising? What technological resources are there? Who is providing clinical and technical support?), and organisational risk (What are this department’s or health facility’s cross-infection risks, medication error rates, etc?) (Iedema et al 2007). This advice recognises a consumer’s right to be informed and think about more than merely the scientific dimensions of care, particularly since medical treatment does not take place in a neutral clinical-organisational environment of predictable staffing and standard technologies.

Second, open disclosure guides hospital staff in openly communicating with patients and their nominated support person following an adverse event (Bauman et al 2003). In the case of open disclosure, guidelines and codes of conduct support the standard’s implementation, although in Australia, the Australian Medical Association’s code of conduct does not contain an express patient disclosure provision (Madden & Cockburn 2007). Statutory protection exists for those who express regret that an error has occurred, ⁸ but there is no corresponding statutory obligation to disclose personal or organisational responsibility (Madden & Cockburn 2007). In contrast, a legal obligation exists in Canada for doctors to fully disclose information, thereby enabling patients to participate in decisions about how the unexpected outcome is to be handled (Legare et al 2007).

What these policy initiatives have in common is that they drive the clinician–consumer relationship towards more ‘democratic’ or shared forms of decision making. Not surprisingly, in recent years shared decision making (SDM) has gained considerable importance (Simon et al 2007). In outlining the current position of SDM in Australian healthcare, McCaffery et al note that support exists in the form of guidelines and interventions (McCaffery et al 2007). They assert however that there is no clear overall policy framework, that resources and infrastructure are limited and that there is no clear implementation strategy for SDM. Despite this, SDM is increasingly embedded in specific initiatives involving the public such as open disclosure (Iedema et al submitted, Iedema et al 2007).

Work is also occurring internationally in relation to SDM. For example the Canadian government has established a Canadian Research Chair entitled the ‘Implementation of Shared Decision Making in Primary Care’ because of the steady increase of the number of diagnostic tools and treatment options available and the amount of information on healthcare services. Healthcare professionals were increasingly required to play a new role as ‘decision brokers’ and patients were being asked to participate actively in decision making on their health. Hence, decision-making processes were seen to be transforming. However the process of SDM is not widespread. Nor is the concept clearly understood (Charles et al 2003). The Canadian initiative is seeking to gain a better understanding of the needs of professionals delivering primary healthcare and prompt them to promote SDM, develop the tools needed to apply this new professional technique, build the most effective strategies for introducing the tools, and assess their impact. The program aims to design effective intervention systems for implementing a SDM process in primary healthcare.

In the UK, Evans et al (2007) note two particular areas where implementation of SDM is proceeding, namely in the education curricula and in patient decision support technologies (PDSTs), including around informed consent (Loh et al 2007). The medical education initiative appears to be limited, however, and PDSTs are described as unplanned and fragmented, although gaining momentum in some clinical domains (Evans et al 2007). Scholars associated with the UK’s National Patient Safety Agency are exploring ways of involving consumers in patient safety and practice improvement. Some of these approaches are proactive and engage patients in infection control initiatives (Davis et al 2007, Davis et al 2008), while others explore the potential of collaborating with consumers across the spectrum of care from prevention of errors to their investigation (Mansell et al 2005). A further example is the UK Citizens Council established by the National Institute for Clinical Excellence (NICE), which seeks input from citizens on issues of clinical need. As well as Canada and the UK, other countries are also undertaking activity in SDM to varying degrees including Italy, Germany, France and the Netherlands (Evans et al 2007, Goss & Renzi 2007, Legare et al 2007, Loh et al 2007, Moumjid et al 2007, van der Weijden et al 2007).

On a broader front, identifying ways in which patients and the public can be more involved in decision making has produced a large body of literature that covers everything from the micro-medical encounter to macro-health-system-related policymaking. Loh et al (2007a) categorised public participation as occurring at three levels: the micro (medical encounter) level, the meso (service/program) level and macro (system) level. Loh et al report that the members of the public they surveyed see their contribution as applying to the macro and meso levels and that the micro level is one where patients themselves should be involved.

Addressing SDM at the macro level, Litva et al (2002) identified a range of ‘impulses’ that projected public participation into the healthcare debate in the UK. These impulses are instrumental, communitarian, educative, expressive and accountability related. The authors described these impulses as promoting or defending the interests and goals of the public in healthcare decisions (instrumentalist), involving communities with common interests and expertise in local healthcare services (communitarian), developing citizens’ sense of competence and responsibility (educative), expressing political identity and belonging (expressive) and the desire for local accountability for a publicly funded service (accountability). Litva et al (2002) further noted that little work had occurred to systematically examine public preferences for being involved in healthcare decision making, including health service rationing, the Oregon experiments (see Sorensen & Iedema, Chapter 1) with public involvement in health resource allocation notwithstanding (Litva et al 2002). The importance of this work is that it showed variations in the willingness of members of the public to be involved. Specifically, the public had a strong desire to be involved in decision making at the system and program levels, preferably through consultation, but without always being prepared to accept responsibility for such decisions. Moreover, the public’s participation was seen to be contingent on a guarantee that their contributions were fully heard and that decisions taken following consultation were explained.

Commenting on meso-level involvement, McGurk et al (in press) suggest that service users have a role to play in service development as well as to support the provision of care. Equally, Gagliardi et al (2008) believe that the public should be involved in service planning and evaluation. These proposals echo Mansell and colleagues’ work on initiating collaborations with consumers around service redesign in the interest of patient safety (Mansell et al 2005). In this respect, the New South Wales (NSW) Health Clinical Services Redesign Program (CSRP) has developed a method for capturing and analysing patient and carer experiences to improve the ‘patient journey’ through the NSW health system. A patient journey refers to the process or progressive steps taken by a patient as they received healthcare. The project is based on research from the Picker Institute UK that found that patients and carers value:

Initiatives are also occurring at the patient advisory level. In the UK, the recent Local Government and Public Involvement in Health Act 2007 established local government networks to consider, among other things, the commissioning, provision and scrutinising of local healthcare services. For its part, the NSW Clinical Excellence Commission (CEC) has established the Citizen Engagement Advisory Council to advise the CEC in relation to systemic safety and quality issues. In this context, ‘citizens’ are those who have experience in the provision of safety and quality in high-risk industries such as the airline and mining industries. This citizen input is supplemented with user input from patients and former patients who have used the NSW health system as well as from interest groups. An important finding about patient experience is that it includes insights into what happens during the ‘gaps’ between the episodes of clinical care – time spent waiting at home for an appointment or time spent recovering in a ward, for example. Strong perceptions of the health system are created during these gaps – usually as a result of the interactions (or lack of interactions) between the patient and carer and healthcare professionals (refer to www.archi.net.au/e-library/build/stories; see also Berding, Resources). Davis and colleagues’ investigation into involving consumers in meso-level collaborations over the shape of services concludes that

Early work at the micro level investigated the views of nurses, doctors and members of the public on behaviour to effectively involve patients in their own healthcare, Weiss (1986) found a number of key norms in six core clusters. Some 20 years ago, Weiss found that developing overt contracts in health relationships, forming egalitarian communication between patient and professional, giving patient access to broad-based information, tailoring of treatment programs, self-care and lifestyle modification activities were beneficial to healthcare outcomes (Weiss 1986). These principles, especially the first three, are of importance to realising initiatives centring on the disclosure of and organised response to unexpected outcomes, a collaborative approach to investigating incidents, and the broadening of informed consent.

The literature just reviewed opens up the notion that not everyone wants to participate in healthcare decision making, or does not want to participate in the same way. Recognising this, Flynn et al (2006) have developed a typology of participation preferences. Clearly, categorising patients as either ‘active’ or ‘passive’ has been unhelpful in the effort to understand those more likely to participate and how they might do so. Instead, the desire to participate can be distinguished based on consumers’ desired roles in decision making. The majority of older adults wanted to be given treatment options, but there are substantial differences in how they wanted to be involved in discussing and selecting particular treatments. Specifically, being female, with higher education, a better self-rated health status, fewer prescription medications and a shorter duration at a usual place of care predicted a higher probability of highly active involvement (Flynn et al 2006, Gaston & Mitchell 2005). Others suggest that much more research still needs to be done on the role that patients themselves wish to play, as well as on the conceptual meanings of ‘involvement’ and ‘participation’ (Thompson 2007). Significantly, Thompson found empirical evidence from a large-scale qualitative study that participation was co-determined by both patients and professionals through reciprocal relationships of dialogue and SDM. Further, involvement depended on the type and seriousness of illness, patients’ personal characteristics and their relationships with professionals. What is emerging here, Thompson believes, are ideas for the basic building blocks of a more sophisticated understanding of involvement within and between different contexts.

In their exploration, Davis and colleagues propose a five-fold taxonomy as an attempt to map the factors that affect patient involvement (Davis et al 2007). Targeting the involvement of consumers in service design and the improvement of patient safety, their framework captures ‘the likely determinants of patient participation in safety-related behaviours’. They propose five determinants affecting consumers’ willingness to become involved:

Not surprisingly, one of the problems in researching patient participation in decision making is measuring results. Such measurement is made difficult by the complex ways in which consumers can become involved. Patient satisfaction has been a common measure for some time, but Draper & Hill (1996) recommend a more robust approach, including a government mandate on consumer feedback and resourcing the development of expertise in feedback by: trialling and evaluating approaches and technologies for obtaining feedback; disseminating research and effective models; and resourcing consumer organisations to be participants at all stages (Draper & Hill 1996). In Simon et al’s (2007) view the problem remains, however, especially in comparing the outcomes of different studies. They point to the likelihood of inconsistent measurement given the complexity of SDM being reflected in how its outcomes are measured (Simon et al 2007), although in Australia, the Australian Council for Health Care Standards (ACHS) is attempting to measure results more consistently by including a consumer participation measure in their EQuIP accreditation standards (refer to www.achs.org.au/EQUIP4).