Co-producing care

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Chapter 7. Co-producing care
Rick Iedema, Roslyn Sorensen, Christine Jorm and Donella Piper

Introduction

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 changing place of patients in healthcare
▪ the experience of open disclosure
▪ the implications for practice of co-production.

The changing place of patients in healthcare

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:
▪ access to care
▪ respect for patient values, preferences and expressed needs
▪ coordination and integration of care
▪ information and education
▪ transition and continuity
▪ physical comfort
▪ emotional support and alleviation of fear and anxiety
▪ involvement of family and friends.
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
… in order to achieve effective and sustainable outcomes for the active involvement of the patient in patient safety, it is important to foster a working partnership between patients and health care professionals. This requires that patient involvement in safety-related behaviours be perceived by all (i.e. hospital staff (e.g. nurses, doctors) and patients) as beneficial to the medical encounter rather than challenging the health care professionals’ clinical skills and abilities.
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:
1. ‘Patient-related: patients’ knowledge and beliefs about safety; emotional experiences with health care delivery and relevant coping styles; and demographic characteristics
2. Illness-related: stage and the severity of the patients’ illness(es); symptoms; treatment plan; patients’ health outcomes; and prior experience of illness (and prior experience of patient safety incidents)
3. Health care professional (HCP)-related: health care professionals’ knowledge and beliefs about safety and patients’ involvement in it; and the way in which health care professionals interact with patients
4. Health care setting (HCS)-related: type of health care setting – primary, secondary or tertiary care setting; and admission process – emergency or elective
5. Task-related: the specific patient actions/behaviours required for involvement in safety.’ (Davis et al 2007:260–1)
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).
A range of strategies have been proposed to close the gap between evidence that consumer involvement is needed and the practice of consumer involvement. Studies of processes involving patients with specific conditions have been productive in identifying the types of intervention strategies most likely to encourage positive participation by both patients and professionals. These studies also serve to make the benefits of patient participation clearer. In relation to asthma patients, Schneider et al (2007) found that patient participation led to better patient outcomes. For their part, Irwin & Richardson (2006) found that patient-focused care improved physicians’ performance, patient satisfaction and health outcomes without additional investment of time and resources. Irwin & Richardson also found better medication compliance an issue in asthma care, although Schneider reports an association between higher participation and medication discontinuation when the patient felt either better or worse. That is, patients appeared to be undergoing an internal negotiating process and coming to decisions for action based on their personal evaluation of their own particular circumstances. Loh (2007) reports similar findings in relation to the primary care of depression.
In relation to cancer care, Gaston & Mitchell (2005) found that all patients with advanced non-curable cancer wanted full information, although only two-thirds wanted to participate actively in decision making. They also found that active decision making was more common in patients with certain cancers. Improvements in the verbal communicative skills of cancer clinicians, and involvement of patients in decision making both generally improve patients’ assessments of their quality of life (Arora 2003). Gattellari et al (2001) found that cancer patients who reported a shared role in decision making were most satisfied with the consultation, information about treatment and emotional support. Importantly, they found that patients were least satisfied when decisions were made exclusively by either party – the patient or the doctor (Gaston & Mitchell 2005, Gattellari et al 2001). Simple interventions such as question prompt sheets, audio taping of consultations and patient decision aids facilitated involvement (Gaston & Mitchell 2005). Variation in patient involvement in decision making may be a hitherto unrecognised cause of practice variation (Sepucha et al 2004).
Donovan & Blake (1992) examined the concept of compliance, and found that patients weighed up costs and risks against benefits as they perceived them and made rational choices based on their perceptions, personal and social circumstances, as Thompson suggested above with asthma patients. Thus, rather than a focus on non-compliance as a factor that plays a role in the (mis)utilisation of resources, a focus on more open and cooperative clinician–patient relationships may be more revealing of both ‘compliance’ and resource utilisation (Donovan & Blake 1992). In relation to Parkinson’s disease, Cohen et al (2007:537) sum up the patient perspective in describing the outcomes of the Parkinson’s pipeline project as ‘authentic voices of patients as collaborators’ and ‘an example of a new breed of knowledgeable consumers armed with first-hand access to research findings and reinforced by online connections to like-minded peers throughout the world’. This type of patient-driven activity reinforces McCaffery et al’s (2007) exhortation that to encourage patient participation, activity needs to move from supply-side to demand-side strategies.
A number of constraints have been identified as limiting patient participation and collaboration. These are outlined below.
1. Friction between professionals in their healthcare roles that can bring conflict that negatively influences patient outcomes and the general work environment (Attaberry 2007). Attaberry (2007) proposes shared governance to promote team building, role understanding, autonomy and employee retention. Clinicians may initially need to develop this model within their own community of practice given the differences that exist within professions as well as between them (Sorensen & Iedema 2007).
2. Burnout from this type of ‘emotional work’ (Strauss et al 1982) has been noted by a number of authors (Sorensen & Iedema in press, Zapf et al 2001). Initiatives such as open disclosure and root cause analysis demand much ‘emotional labour’ (Hochschild 1983) even before contact is made with consumers. Practitioners do report however that emotional labour with colleagues and with consumers, while taxing, can result in greater work satisfaction and better relationships (Iedema et al 2007).
3. Family requests for deception to protect a patient from bad news and doctor compliance can have a cascading effect. As Capozzi & Rhodes (2006) assert, when something is concealed, people avoid situations where the issue might arise. Avoidance, in turn, results in distancing between the clinician and the patient (and family) precisely when attention and intimacy might be needed. Complicating this as well, when truths are ultimately revealed, trust deteriorates still further. Hence, serious harm and emotional abandonment are the likely outcomes of non-openness, even in cases where the deception is initiated for the patient’s good (Capozzi & Rhodes 2006).
4. In a study in psychiatry, Goossensen et al (2007) found that clinicians did not explicitly ask meta-questions, such as checking the preferred approach of the patient to receive information or the preferred level of involvement in decision making, but rather choose to rely on an intuitive ‘feel’ as to whether the patient wanted to be involved or not. The authors concluded that physicians should be able to take part in SDM even if the patient is not asking them to.
5. The discourse of the patient as an active agent in managing their illness and healthcare may become a means through which clinicians can withdraw from responsibility for areas of patient need that are problematic, for example unexplained symptoms, chronic disease and pain (Salmon & Hall 2003). Thus, Salmon & Hall (2003) suggest that the patient involvement discourse can affect the boundaries of medical responsibility in a way that advantages medicine. In this regard, Anderson (1996) believes that the unreflexive use of consumer empowerment can deflect attention away from economic and social structures that perpetuate inequalities, for instance among people who are marginalised and disadvantaged.
Linked in with this last point, Allsop & Mulcahy (1998) found that physicians regarded complaints as a challenge to their expertise and technical competence. Complaints were therefore seen to threaten professional identity. Berlinger (2003) suggests that the rift between patients who suffer medical error and doctors who commit them may occur because physicians or hospitals fear exposure for legal and insurance reasons (Berlinger 2003). There is evidence emerging to suggest however that ‘radical openness’ may pre-empt consumers’ intention to file complaints and lawsuits (Kraman & Hamm 1999, Lamb 2004, Wojcieszak et al 2006). In the following section we explore what this new policy of openness means for consumers.

The experience of open disclosure

Clearly, the factors that inhibit openness and participation are complex, personal, professional, organisational, legal and financial. Complicating this further is that goal setting and treatment processes in clinical medicine are complex, and the potential for unexpected changes as well as disagreements regarding these goals and processes are substantial (Bradley et al 1999). But there are factors that can mitigate this complexity. In looking at what influences physician communication and perceptions, Street Jr et al (2007) found that physicians’ inclination to be patient-centred depended on patients’ willingness to be involved, although the question arises whether patients’ willingness indeed determines physicians’ inclination, and to what extent the obverse is true. One would expect involvement to be co-constructed, with reciprocity and mutual influence playing a prominent role in patient–physician interactions.
Other commentators have pointed to readiness as a factor determining involvement. In reviewing research on patient participation in decision making, Guadagnoli & Ward (1998) concluded that the patient’s level of readiness to participate in decision making must be assessed and methods to engage patients should be developed based on their level of readiness. Nevertheless, the same might be true for clinicians who themselves may need to have reached a level of readiness in their personal and professional attitudes to patient care before they are capable of realising adequate consumer involvement. Cancer patients who were given a booklet that included a question prompt sheet and booklets on clinical decision making and patient rights were more anxious and significantly less likely to achieve their preferred involvement in decision making (Butow et al 2004). The authors described their causal view in the article titled: ‘Changing patients but not physicians is not enough’. The organisation must also be supportive. In one study consumers ceased proffering a patient-held record when they perceived that they were imposing extra ‘paperwork’ on stretched NHS staff (Williams et al 2001).
Currently, a fear of legal and insurance implications and uncertainty about personal ramifications on the part of professionals are preventing not just formal disclosure of and apology for unexpected outcomes, but also consumers’ involvement in service improvement and patient safety (Iedema et al 2007). The evaluation just cited does nevertheless suggest that health professionals respond positively to the principles and practices of open disclosure, and that it ‘is met with approval and relief on the part of health professionals and consumers’ (Iedema et al 2007:4). Not all clinicians respond in this way. In addition to the group of interviewees who expressed relief about being mandated to disclose unexpected outcomes, another group claimed that ‘they were already doing open disclosure’ and had been doing it ‘for quite some time’. Interviews with consumers about how their unexpected outcomes were handled suggested, however, that in surprisingly few instances adequate open disclosure procedures were followed. This calls into question clinicians’ confidence about the effectiveness of their disclosures, and the representativeness of their views about the adequacy of their communications with patients (and their families).
We feature five excerpts that illustrate how clinicians and clinical managers are changing their attitudes to patient engagement and their manner of practice in relation to open disclosure, and how patients are enabled and encouraged to take on a co-productive role in (re)defining the type of healthcare they wish to receive. The first excerpt features a clinician who has attended an intensive open disclosure training program. Here, this interviewee talks about advising colleagues about what is necessary for open disclosure to succeed.
Excerpt 1: Clinician A
As soon as you say open disclosure I think everyone feels more comfortable anyway … And it might just be a personal feeling. I am a person who feels quite uncomfortable when everything is to be too confidential (e.g. in root cause analysis processes) rather than everything is going to be open … I think it is probably the fact that you can go to them (other clinicians) and say, ‘Look, there is actually a really good way of dealing with this. It is very simple. I’ve done the [open disclosure] course and this is what it teaches you and you really think this really does work very well.’ And I told them what to expect: ‘When we walk in there, the patient will be angry. The body language will be angry. The eyes will be angry, the words will be angry.’ And what happened of all the things I have said will happen, happened … I talked about it in theory before we got there and said, ‘The most important thing upfront is this, do such and such. We are going to say sorry and then we are going to sit down and shut up.’ Because basically you can put it down into: ‘Say sorry, shut up and listen.’ And then explain if you need to. But explain it at the patient’s pace, not your own. And everything just went from there really …
(14 June 2007)
The way in which this clinician achieved this ability to ‘listen to patients’ is recounted in the second extract below.
Excerpt 2: Clinician A
And one of the good things about the course we did was that they had actors who did it. And it is one thing to say, ‘Oh, yes, I do this.’ It is one thing to verbalise what you do but it is a very different thing to actually do it … However little experience you’ve got even with a single course, I have done this once, but just having had that course I felt Yes, I think I know how to do this and I went in there and it worked. And it was one of the most useful things I learnt to do.
(14 June 2007)
For their part, patients often have clear care expectations, and this is particularly the case with childbirth. The following excerpt is a dialogue from an interview with a patient whose delivery went seriously wrong. This patient and her husband had prepared a specific plan for the birth of their child. This plan was discussed and agreed on with the delivering clinicians beforehand. In response to a question from the interviewer about whether the patient was told and knew of the risks before she delivered her baby, she responded:
Excerpt 3: Patient A
No. I mean, I’m overweight, and obviously that’s always a risk factor but I wouldn’t have thought that would be a risk factor for tearing, but even if it is, I had a second degree tear with my first daughter, so I did expect that there would be some tearing. When I sort of found a position for delivery that I was comfortable with I asked whether it was suitable. I did ask whether they’d like me on the bed and they said, ‘No, wherever you’re comfortable.’ And I thought okay, let’s do it … and I’m very lucky; the labour for me was perfect – the tear hasn’t affected the way I feel about the delivery … My daughter was facing the wrong way; they never picked that up and … I was mentioning to them that my stomach felt like she was facing the wrong way and they didn’t take that into account and I feel that they didn’t really listen to me from the very beginning. I had to force them to read my … plan … My husband and I had a … plan …very, very definite feelings on childbirth and we had to really encourage them to read that and take it seriously. They’re all things that didn’t bother me at the time but in hindsight it’s very distressing.
(6 July 2007)
The role of clinical managers is pivotal in engaging with patient-centred policies such as open disclosure, in promoting disclosure in clinical circles and in managing the appropriate enactment of this innovative policy. In the excerpt that follows the clinical manager, the deputy director of the clinical division in which the standard was being implemented, indicates the level of support that implementation received in the organisation, a large metropolitan tertiary teaching hospital.
Excerpt 4: Clinical manager A
The organisation, and the leaders in our division see it as a very good idea and feel committed to it, but it’s the individual senior clinicians [who] have to be won over. I reckon if they got exposed to it, to understand, to have the opportunity to do the training on a widespread basis I’m sure they could, you know, I’m sure they’d actually feel a lot more committed to it.
(13 June 2007)
In relation to a question about how to get doctors involved in the process, he went on to say the following.
Excerpt 5: Clinical manager A
Oh, I think all doctors are a bit, I mean, anything that forces you to confront people when the outcome has been bad is quite threatening and furthermore, threatening because doctors have to admit that they have something to learn before they’ll go for it, um, and finally, I think even though intellectually you can say, Oh, this is a really good idea, there’s still a slight fear about revealing the details of things, particularly when it hasn’t been handled very well with people, and that’s pretty threatening too, to actually find yourself in a situation where you’re admitting something’s gone wrong because it just hasn’t been the way medicine has been.
(13 June 2007)
In effect, open disclosure is a policy that mandates co-production of care, albeit only in cases of unexpected outcome. But the success of open disclosure is to a large extent contingent on the way clinicians have shaped their relationships with consumers in the course of the treatment trajectory. These relationships, in turn, are forged in an important sense upon admission. An important part of this forging includes informed consent, a topic that warrants separate detailed examination in this regard. In this sense, the pressure to disclose has ramifications for all dimensions of professionals’ communications with consumers. Equally, open disclosure represents an important driver towards acknowledging the consumer as prosumer.

The implications for practice of co-production

We take the three levels of participation outlined by Loh et al (2007) above and consider the foregoing information in terms of its applicability at the macro (system), meso (service/program) and micro (medical encounter) levels of practice. Table 7.1 sets out the levels of participation and the kinds of activities that might be associated with practice at each level, from a co-production perspective.
Table 7.1 Associated practices at each level of participation
Level of participation Associated practice
Co-producing quality at the micro (medical encounter) level
• Informed consent to treatment options with disclosure of probable risks and outcomes
• Collective, inclusive multidisciplinary team collaboration, pooling information and generating consensus, that includes the patient to develop an agreed plan of care (see Kerosuo, Chapter 5)
• Reviewing care outcomes, including disclosing information about patient status such as where errors are made and their remediation (see Willis, Dwyer & Dunn, Chapter 6)
Co-producing service at the meso (service/program) level
• Planning services and evaluating service outcomes
• Linking population and patient-based care, e.g. through mass customisation methods (see Berg, Schellekens & Bergen, Chapter 8)
• Obtaining feedback and incorporating consumer groups’ expertise in particular conditions
Co-producing the vision at the macro (system) level
• Allocating scarce resources
• Governing standards and assessing accountability for system outcomes
• Deliberation about what the system should achieve such as the moral and ethical underpinning of healthcare, e.g. through citizen’s juries (see Mooney, Chapter 13)

Conclusion

Public participation in producing healthcare will be predicated on a changing orientation to healthcare practice by all stakeholder groups. This reorientation is already occurring, evidenced by the observations made by the clinician and the clinical manager featured in the excerpts above. The changes they comment on as having happened to them, to the relationships they have with colleagues, and to their relationships with patients point to important changes in healthcare, in particular that:
▪ new kinds of people will deliver and shape the healthcare of the future
▪ new kinds of workers who embody new and different relationships will plan and deliver care, in conjunction with prosumers who have knowledges and discourses enabling them to make their lifeworld experiences relevant, audible and visible to healthcare staff, over and beyond the confines of ‘history taking’, explanations of ‘known risks’, and expressions of care preferences
▪ new kinds of expertise will develop that includes the clinicians’ ability to enhance the exercise of technical skills and knowledge to collaboratively produce care.
These new workers and prosumers will find ways to collaborate in the construction of healthcare processes, ranging from chronically ill patients taking charge of their disease as part of their role in their ‘year of care’ contract (Degeling et al 2006) to victims of harm being invited to participate in incident investigations and practice redesign (Iedema et al 2007).
Finally, while profoundly significant in itself, involving the public in healthcare is also important in that it extends beyond making sure that individuals’ and issue groups’ views and experiences are taken into account in the enactment of healthcare treatments, the planning of services, and in the determination of policy. For healthcare organisations and health departments to retain public respect and support, the absence of deliberative space that has thus far characterised relationships and practices in health needs to give way to processes, intensities and dynamics that retrieve healthcare’s legitimacy, or its ‘public value’ (Horner et al 2006, Moore 1995). Policies like open disclosure, and trends like patient centredness and consumer involvement, are, in that sense, crucial resources by means of which state governments need to reconcile the growing gap between healthcare promise and healthcare performance. The health of healthcare was once thought to depend on the invention of new medical technologies and drugs on the one hand, and on the eradication of under-performing individuals on the other hand. We suggest we have entered a new era, where neither of these kinds of blunt strategies will carry much weight. Simple transparency of process can erode trust (Taylor-Gooby & Zinn 2005), however, if the consequences of the manner in which healthcare services are planned, produced and delivered are not addressed. A discerning public will expect to be informed in less simplistic ways about the future options of healthcare practice. In sum, the public value of health is now conditional upon health practitioners and policymakers capitalising on the emergence of the health prosumer.
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