Facilitating consumer participation: An approach to finding the ‘right’ consumer
Article Outline
- Summary
- Introduction
- Background
- Finding the right consumer
- The homogenous consumer
- Discussion and conclusions
- References
- Copyright
Summary
Contemporary health care increasingly dictates that consumers of services should become active participants in the health care system. This has placed responsibility on administrators, managers and clinicians to include consumers in key strategic and decision making initiatives. However, this direction has not been accompanied by clear policies or guidelines. Consequently confusion about selecting consumers able to provide valuable input is identified as a barrier to active consumer involvement. The purpose of this paper is to address some concerns raised in the quest to find the “right” consumer, including: finding a consumer without an axe to grind; ensuring the consumer is representative of broader views; health professionals as consumer representatives. While these concerns are common they have not yet been extensively debated and discussed in the broader literature. Strategies necessary to support consumers in participatory roles are also considered and the controversial subject of financial remuneration for consumers is also explored.
Keywords: Consumer participation, Tokenism, Mental health services
Introduction
Ensuring that health services of the future are responsive to the needs of consumers has led to an increasing recognition that the people who use these services need to have greater involvement in their development, operation and evaluation (Jones, 2007, Russo, 2007). In order for effective participation to become a reality it is important that barriers to this initiative are recognised and strategies implemented to overcome them (Petersen, Hounsgaard, & Nielsen, 2008). The aim of this paper is to present and some common but subtle barriers to successful consumer participation that have not as yet been raised in the contemporary literature. It is intended that this will enhance awareness and debate on this important issue and therefore avoid consumer participation in health care becoming little more than a tokenistic gesture.
The term consumer has only recently become common language in the health care sector and is frequently used as an alternative to patient or client. Consumer has been defined in Australian Government publications as:
Those who use or are potential users of health services, including the family and carers of patients and clients. This includes those who may be directly or indirectly affected by health services (Moore, 2003, p. ix).
For the purposes of this paper however, the term consumer will be used specifically to refer to the users and potential users of services. Patients and families are distinguished from consumers by use of the term carers, as the needs and issues of these two groups have been found to be quite different at times, particularly in the mental health field (Goodwin and Happell, 2006a, Lammers and Happell, 2004) and that assuming their needs and issues are synonymous may lead to the weakening position of one or both of these groups.
Background
The final report of the Taskforce on Quality in Australian Health Care (Taskforce on Quality in Australian Health Care, 1996) recommended the reform of health care processes and systems with a strong focus on increasing the ability of consumers to be active participants. Since that time a number of Commonwealth initiatives have been funded and implemented to ensure that effective and genuine consumer participation can occur, including the funding of initiatives such as the consumer provider partnerships program (Moore, 2003). In the mental health field, consumer participation has been clearly identified as a policy directive since the publication of the National Mental Health Plan in 1992 (Commonwealth of Australia, 1992) and has continued to be a prominent feature in mental health policy documents (Commonwealth of Australia, 1997, Commonwealth of Australia, 1998, Commonwealth of Australia, 2003).
Within the mental health field, consumer participation is generally considered to encompass both the individual and systemic levels of approach (Goodwin & Happell, 2006b). At the individual level, participants should be given the opportunity for involvement in decision making regarding individual care and treatment. At the systemic level consumers are expected to influence service delivery more broadly through membership of key strategic committees, and through employment roles (such as consumer consultants) (Meehan et al., 2002, Middleton et al., 2004). In the general health field, the literature more commonly refers to the individual level where consumers have the opportunity to be more actively involved in their own care and treatment (Cadd et al., 2000, Kenny et al., 1999, Penney and Wellard, 2007, Roughhead et al., 2003, Wellard, 2007). Some reference is also made to more systemic approaches such as providing training for people to become advocates for consumers with specific health conditions such as breast cancer (Davis et al., 2001, Johnson, 2001, Wellard et al., 2003).
Although positive advances have been made, there is widespread acknowledgement that significant barriers exist to genuine and active consumer involvement in health care delivery (Goodwin and Happell, 2006b, Happell, 2008a, Happell, 2008b, Lloyd and King, 2003, Moore, 2003). These have been identified as the reluctance of health providers to engage with consumers in a more equal way (Goodwin and Happell, 2006b, Lloyd and King, 2003, Moore, 2003) the lack of resources to help consumers understand and negotiate a complex health care system, and a tendency to include consumers in a tokenistic way and therefore preventing the opportunity for genuine involvement (Moore, 2003). On the basis of an ethnographic investigation, Wellard et al. (2003) observed that while nurses appeared to have adopted the rhetoric regarding consumer participation, their practice did not tend to reflect the espoused ideals and frequently they contributed to barriers to effective participation.
Several barriers to nurses facilitating effective consumer participation have been identified in the literature, these include insufficient time, inadequate knowledge, and difficulties in relinquishing power and establishing a more equal relationship with consumers (Goodwin and Happell, 2006a, Goodwin and Happell, 2008, Happell, 2008a, Happell, 2008b, Petersen et al., 2008, Tobin et al., 2002). As a result of these barriers, consumer participation tends to become tokenistic (Happell and Roper, 2007, Meehan and Glover, 2007).
The author has worked actively for several years in support of consumer participation, including the introduction of an academic position for a consumer of mental health services; involving consumers in writing curriculum, face to face teaching and research projects; advocating for consumer participation both formally and informally on a number of committees and working parties. As a result of this experience a number of opinions and actions have been encountered that present as barriers but which have been absent from or not strongly considered in the literature. These are grouped under the following themes:
This aim of this paper is to present and discuss each of these five themes, and consider the extent to which they actually or potentially present major barriers to creating an environment where consumer participation is encouraged.
Finding the right consumer
How to find a consumer without an axe to grind!
This heading reflects a statement made by the Chair of an Australian Government initiated National Inquiry, in a public forum, when asked why no consumer representatives were present. However, anecdotal evidence suggests this is not an uncommon reaction to the inclusion of consumers and reflects the view that generally consumers who are unhappy with their experiences of health care are the ones who want to become actively involved in order to vent their feelings. There appears to be a further implication that for this very reason, they are probably not best placed to be included, or that their views and opinions need not be taken seriously.
In order to fully consider this issue it is important to adopt a reflective stance.
The author therefore poses the following question to readers: What prompts you to voluntarily become a member of a Committee or Working Party? Most answers would be expected allude to the presence of strong views and opinions, and/or a desire to contribute to improved outcomes or a better way of doing things. There is an abundance of nursing literature which demonstrates the heavy workloads and subsequent shortage of time that nurses experience (Duchscher, 2008). In light of this it is unlikely that we would seek to be involved in matters that we are satisfied with or that we do not have a strong opinion about.
So why would we expect differently of consumers? While there is no research evidence available to support the claim, it is generally accepted that consumers become politically active as a consequence of negative experience of health care. Should this be viewed as either surprising or undesirable? People who receive health care either within a hospital or a community setting and experience no complications or unexpected events, are likely to be satisfied with their care and treatment and in all likelihood will return to their former routines with minimal disruption, and feel no need for an ongoing role within the health care system. On the other hand, those whose experiences are not so favourable may wish to become active participants in health care for a number of reasons including the desire to make a difference and enhance strategies or processes that will avoid similar experiences for future patients.
Objection to individuals or consumer groups with an axe to grind suggests there is a preferred alternative. Is that alternative a passive, agreeable or non-confrontational consumer? One who does not challenge, oppose or disagree with the views of nurses, health care professionals or administrators? Probably few would want to admit to this statement. However, it is imperative to consider what we want from consumers who do participate in health care, whether we want them to agree with us, reinforce our sense that we are doing a good job and operating with the best interests of patients in mind, or whether we want people to challenge us, assist us to see things from the perspective of those who are ultimately effected by our practice and policies. If (as it should be), the latter is what is desired, we should not reject, indeed we should probably actively seek, the input of consumers with an axe to grind. We should respect their opinions and allow ourselves to be challenged by statements and opinions that may take us beyond our comfort zone.
The ability to accept criticism in this way can be difficult for nurses. Roper and Happell (2007) described ‘professional defensiveness’ as a response from nurses when the actions of nurses or the quality of care they provide are described by consumers in negative terms. As a result of this defensiveness, nurses frequently feel compelled to defend these actions, even when they refer to experiences outside the sphere of knowledge of the individual nurse who feels attached. Statements like ‘they [consumers] do not know what its like for us [nurses]’, appear to imply that consumers should be more sympathetic of nurses as when taken to extreme, that they should surrender their right to be critical, least it cause distress and unrest for nurses (Happell, 2008d, Lilja and Hellzen, 2008, McCullough, 2008, Warne and McAndrew, 2008). While it may not be easy, successful consumer participation requires a commitment on the part of nurses and other health professionals, to work through individual and professional discomfort and allow the consumer voice to be heard and considered.
A representative consumer
Closely related to the above is the idea that consumer participants should represent the views of what is often termed as the ‘ordinary’ consumer. Indeed the consumer with the axe to grind is often criticised for being unrepresentative of the broader group (Crawford et al., 2003, Crawford and Rutter, 2004, Rutter et al., 2004) and is therefore not appropriately equipped to speak on behalf of the broader group. This view is succinctly reflected in the following statement by Tobin et al. (2002:98):
“How do we canvass the views of consumers broadly and reduce the risk of sectional interests of consumers being the only contributors to the debate?”
In considering this seemingly reasonable argument it is important again to reflect on our own professional experiences. How often do nurses receive an invitation to join Committees or Working Parties because they are considered to represent nurses more broadly? Membership of Committees, particularly key strategic Committees, commonly extends to people who hold senior positions within organisations, such as Directors of Nursing, Heads of Academic Schools or Departments. It is not unusual for representation to be selected on the basis of seniority, with nursing managers and leaders invited to participate or to provide a nominee to represent them (Tobin et al., 2002).
Alternatively, representation is sought by invitation to professional bodies such as the Royal College of Nursing Australia (RCNA). The issue of representation automatically becomes problematic as not all nurses belong to the RCNA, and among those members very few would be regarded as actively involved in the organisation (Tobin et al., 2002). Given this, there would be no reason to assume that these individuals are any more representative of a broad range of nurses than an individual consumer is representative of a broad range of consumer views.
The argument that consumer participants should not be taken seriously unless they can clearly prove themselves to be representative of a broader constituency, has serious implications for the integrity of consumer participation, as Roper and Happell (2007) argue:
“To suggest, therefore, that the voice of consumer activists or advocates should be less influential unless it can be demonstrated to be representative, is tantamount to discriminating against a group that is already marginalized and subject to the stigmatizing attitudes of mental health professionals (p. 6).”
Furthermore, the idea that consumer activists do not represent broader consumer views is not supported by research evidence. On the other hand, research conducted by Crawford and Rutter (2004) found the views, issues and concerns of an organised consumer group to be very similar to those of a broader patient group. In this study, the two participant groups were asked to rate the importance of specific priorities for service developments. The primary differences between responses reflected a higher weighting to each of the priorities by the organised consumer group.
The fact that the same priorities were identified by both populations is an important finding. It is important to acknowledge that this was a relatively small scale study with limited generalizibility. Nevertheless, it provides a basis to challenge the common assumption that consumers who choose to be active portray ‘sectional interests’ that do not reflect the views and opinions of those who do not (Crawford & Rutter, 2004).
The homogenous consumer
At the opposite end of the scale is the concept of the homogenous consumer. With the increasing expectation that key strategic committees include consumer representation is it simply a case of including a consumer, any consumer? If representation is to be genuine and effective, it needs to be relevant and appropriate for the issue under consideration. For example, generally one would be unlikely to select a community health nurse to represent nursing on a committee developed to investigate the critical care nursing workforce. In a similar vein, consumer representatives should be selected on the basis of their specific experience. Clearly a consumer who has undergone transplant surgery, would be far better placed to advice on the needs of consumers in these circumstances, than they would to provide advice on proposed changes to mental health legislation.
This seems so simple and obvious that perhaps it need not be discussed. However, the use of health care services is so common that nurses may consider themselves to be consumers of mental health services and therefore be able to bring a consumer perspective to matters of strategic importance. Indeed the author has witnessed numerous accounts of nurses claiming to have a consumer perspective based on their previous experience of using health care services.
Such claims may be well intentioned, aiming to break down barriers between those who provide and those who receive services (Happell, 2007). Without doubt large numbers of nurses have been on the receiving end of service use and through this experience are likely to have developed opinions about how services could be improved. The fact that nurses, as health professionals, come from a much more informed position than most consumers is an important consideration that extends beyond the scope of this paper. However, while nurses should not automatically be excluded from being considered as consumers, they should have relevant experience with the specific illness, treatment or care that is the subject of interest. Using own consumer experiences as authority to comment on consumer issues in a general sense presents a potentially significant barrier to consumer participation.
Promoting consumers as equals
The idea that consumers should be treated with equality is an important component of any successful attempt to introduce consumer participation into health care. However, the concepts of equality and being equal are commonly confused, which Roper (2003) argues occurs to the detriment of consumers:
“Being told: “You are just the same as any employee” sounds good, sounds egalitarian, but in fact we aren’t the same…we do not yet have enough experience of safety or access to decision making to have experimented with what we might need and hence begin to articulate those needs” (p. 4).
In reality consumers do not have nearly the same access to resources, sources of knowledge and collegial support as nurses and other health professionals (Happell & Roper, 2006a). Treating them as equals, negates the needs they have for training, support and the resources to be able to effectively participate in health services at either an individual or strategic level (Meehan et al., 2002, Middleton et al., 2004, Roper, 2003). Effective consumer participation requires recognition that consumers currently need a higher degree of support and resource provision than their counterparts from the health professions (Meehan et al., 2002, Middleton et al., 2004, Roper, 2003) in order to be able to make a positive contribution to the mental health service system.
Remuneration vs. volunteers
Whether or not consumers should be remunerated for their role in participation has also attracted quite strong views on both sides of the fence. Consumer activists argue that remuneration acknowledges the importance of their contribution and considers the expertise they provide as valuable and therefore worthy of being paid for (Yuen & Fossey, 2003). Anecdotally, many health professionals oppose payment, and frequently use statements like: “I’m not paid to attend, why should they be?” Such a response is ill-informed. Most health professionals attend meetings and other strategic activities as part of their paid role. Even where they engage in these activities outside of working hours, this form of community engagement is frequently either an expectation of the role or “good for the CV” in that it adds strength to a professional's quest for career progression or promotion.
Consumer participants are expected not only to give up their time but to provide valuable expertise as a means to value add to the health care system. If this important role is expected to fall on the shoulders of volunteers, many consumers may be precluded from involvement due to financial hardship and it is likely that those with less economic constraints will be most likely to be able to participate. Although there is no intention to suggest that consumer participants need bear the burden of being broadly representative, potentially excluding participation on economic grounds would not appear conducive to ensuring that genuine consumer participation has been facilitated.
Discussion and conclusions
Consumer participation in all aspects of the health care system is increasingly becoming recognised as an important aspect of, and an opportunity to enhance the quality of contemporary health care (Johnson, 2001, TQAHC, 1996, Wellard et al., 2003). However, the successful implementation of any new strategy requires goodwill and commitment from a broad number of stakeholders to ensure that we move beyond rhetoric to enact meaningful and sustainable change.
Barriers to consumer participation have been acknowledged in the literature, one of the major barriers being the difficulty health professionals face in working with consumers without the traditional power differentials (Browne et al., 2008, Davis et al., 2001, Goodwin and Happell, 2006b, Happell, 2008c, Moore, 2003, Wellard, 2007, Wellard et al., 2003). Consumer participation can only flourish if there is a widespread willingness on the part of health professionals to work through these concerns and embrace consumers in more collegial relationships.
While the literature acknowledges attitudes of health professionals as a potential barrier, the focus tends to be on the more obvious power differentials (Browne et al., 2008, Davis et al., 2001, Goodwin and Happell, 2006b, Happell, 2008c, Moore, 2003, Wellard, 2007, Wellard et al., 2003). The current paper explores and critiques some of the concerns that have been heard anecdotally but have not yet been reflected in the printed literature. The idea that the consumers who seek participation are those with an axe to grind, and that this is undesirable, need to be debated. The right and indeed the responsibility of consumers to bring their experiences are they negative or positive to the table must acknowledge by other stakeholders. This will be challenging for many professionals and will require them to overcome their professional defensiveness and be prepared to receive and consider criticisms from consumers (Roper and Happell, 2007, Warne and McAndrew, 2008).
The legitimacy of expecting consumer activists to be representative of a broader consumer constituency (Tobin et al., 2002) must also be challenged. Expecting consumer representatives to conform to a stricter set of rules than health professionals are required to is discriminatory and therefore a potent barrier to effective participation (Happell & Roper, 2006a). Happell and Roper (2006a) suggest that consumer activism should be considered as a leadership role rather than a representative one.
Consumer participants must be selected on the basis of their experience and ability to contribute to the specific issue in question rather than being considered as “a consumer” or “the token consumer” (Happell, 2008a, Happell, 2008b, Happell, 2008c, Happell, 2008d, Wellard, 2007). While consumers should be treated with equality, the fact they do not have equal access to support and resources requires recognition, with clearly demonstrable steps being taken to ensure the necessary resources for genuine participation are made available (Happell and Roper, 2006b, Meehan et al., 2002, Middleton et al., 2004, Roper, 2003).
Furthermore, if consumers are to be acknowledged as experts with a significant contribution to be made, then the provision of adequate and appropriate remuneration must be an automatic part of the process rather than one that consumers need to constantly argue for. Remuneration is more than simply a financial incentive to participate, it represents recognition of the importance of consumer participation and the value that this contribution can provide to the ongoing development of health services to meet the needs of those directly affected by them (Yuen & Fossey, 2003).
Nurses constitute a significant proportion of the health care workforce (Australian Institute of Health and Welfare, 2008) and therefore have a significant role to play in ensuring the success of initiatives to promote and foster consumer participation (Goodwin and Happell, 2007a, Goodwin and Happell, 2007b, Penney and Wellard, 2007, Roper and Happell, 2007 Wellard et al., 2003). The awareness and capacity of nurses to dispel the subtle myths with the powerful potential to undermine consumer participation, will place nursing in an ideal position, not only to contribute, but indeed to lead consumer participation initiatives in Australia and internationally.
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PII: S1322-7696(10)00018-1
doi:10.1016/j.colegn.2010.03.001
© 2010 Royal College of Nursing, Australia. Published by Elsevier Inc. All rights reserved.
