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Manufactured but not imported: new directions for research in shared decision making support and skills
Patient Education and Counseling 50 (2003) 33–38
Manufactured but not imported: new directions for research in shared decision making support and skills Adrian Edwards∗ , Rhodri Evans, Glyn Elwyn Department of Primary Care, Swansea Clinical School, University of Wales, Singleton Park, Swansea, Wales SA2 8PP, UK
Abstract Significant conceptual work on shared decision making has taken place but there are still significant challenges in achieving it in routine clinical practice. This paper outlines what research has identified to date that may promote shared decision making, and the further research that is required to enable continuing progress. Greater understanding of the models of decision making and instruments to identify them in practice are still required. Specifying consumer competences, developing instruments to assess these and interventions to enhance them may also be important. Clarifying all these aspects may enable those charged with training professionals to improve the content of professional development programmes. This may be particularly important in the field of cancer treatments where the stakes are high-patients usually desire much information but their desire for involvement in decision making is more variable. The consequences of getting this balance right or wrong are significant with much to be gained or lost. Continued development and evaluation of decision aids and decision explorers that use interactive technology will also be important in identifying how to progress with consumer involvement. If we can learn these lessons, then wider implementation of shared decision making or consumer involvement may become a nearer prospect. © 2003 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Shared decision making; Consumer involvement; Decision aids
1. Introduction The movement towards greater consumer involvement in decisions about their treatment or health care options— often referred to as ‘shared decision making (SDM)’—has reached an important and interesting juncture. It is over 5 years since the seminal paper by Charles et al. [1] was published subsequently supported by many other publications from the same and other key authors in the field [2–4]. One can probably summarise developments in the field by saying that the initiative to promote SDM has spread across many of the academic institutions, including both researchers and educationalists, and is well supported likewise by consumer representative and advocate organisations. However, in the reality of ordinary health care practice, away from these ‘ivory towers’, SDM remains a relative rarity or at best a novelty whose place is uncertain [5,6]. Attention has therefore begun to focus on the reasons for this apparent gap between theory, policy and education and the reality of health care practice. Considerable advances have been made to date in research in this field and a number of important areas for fur∗ Corresponding author. Tel.: +44-1792-513062; fax: +44-1792-513423. E-mail address: [email protected] (A. Edwards).
ther research are being identified which may help to understand issues relating to implementation. In doing so they may also take forward the understanding of SDM conceptually.
2. Models of decision making The first area of research concerns models of decision making. Charles et al. identified three broad models of decision making—paternalism, shared decision making and informed choice [1]—see Fig. 1. The distinction between the latter two is where much difficulty arises. From the theoretical perspective, the informed choice model comprises giving information to consumers who, with their preferences and utilities then have the required elements with which to make an informed decision [7]. The professional has not however contributed his or her opinions or recommendations. In the SDM model, both professionals and consumers contribute information and opinions so that decisions take account of both recommendations and preferences, and the process is characterised by interaction [7]. Despite this delineation of three models it appears hard to distinguish them in practice, particularly between SDM and informed choice. One explanation for this may be that the three models are not compartments but part of a spectrum:
0738-3991/03/$ – see front matter © 2003 Elsevier Science Ireland Ltd. All rights reserved. doi:10.1016/S0738-3991(03)00077-6
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A. Edwards et al. / Patient Education and Counseling 50 (2003) 33–38
Fig. 1. Models of decision making [7].
from paternalism through SDM to informed choice. Where an individual consultation sits on this continuum is a subjective view (at least with current research methods). These views inevitably vary between people assessing the consultation. A large part of this variation probably stems from the fact that the assessment must be based on observations of the verbal and non-verbal communication between consumer and professional. The level of involvement, though, is a function of the perceptions of the participating consumer and professional—an altogether harder aspect to gauge in assessing consultations. Alternatively, it may be that SDM and informed choice are not identifiably separate models, but are more likely to be dictated by the context of the consultation. Efforts to achieve greater consumer involvement in decision making may intrinsically veer more towards the informed choice in some settings. Examples include family planning decisions, choices about antenatal screening tests, or treatments for long-term conditions which are important but generally not life threatening, such as menorrhagia, menopausal symptoms, and prostatism. In these scenarios, the consumer is most likely to be making the decision, once provided with relevant information. As personal choices, the professional’s view is likely to be less significant than in other contexts. These others include, for example making decisions about chronic treatments that affect future risk of disease, such as hypertension and ischaemic heart disease, or considering screening tests such as mammography or Papanicolau smears. In these the harm and benefit profile of the available treatments or tests may be important in the decision making and weighed by both consumer and professional [8]. Still further, there may be other contexts where patients are more likely to prefer the balance in decision making to be with the professional. Examples include acute or emergency care, or—and particularly relevant to this publication—treatment decisions in major illnesses such as cancer, in which the significance of the illness, treatment options and outcomes is so great. In these scenarios, some
patients still actively prefer to lead and to take decisions, but many others prefer to be led by professionals, even if they might have been more involved in the types of decisions noted above (personal and lifestyle choices, etc.). This may be explained by the fact that a significant ‘side-effect’ of the decision making process can be regret experienced if one’s decisions lead to adverse outcomes—this is relatively spared when someone else has taken on the responsibility of decision making. However, these variations are not easily distinguished in clinical practice or research. It may be that separating the SDM and informed choice models is not actually justified. The context may make one model automatically more likely. The important issue is whether the apparent distinction of these models in the first few years of the consumer involvement movement has led to confusion among health care professionals [9]. Confusion could give rise to disillusionment as professionals try unsuccessfully to implement an inappropriate model, such as shared decision making in family planning contexts where the ‘natural’ model of involving patients effectively is informed choice. A third possible explanation for the difficulty in distinguishing between SDM and informed choice may lie in the weaknesses of instruments available to assess decision making models in consultations. The range of instruments available has been reviewed elsewhere [10]. A new instrument specifically to assess levels of involvement was developed by Elwyn et al. [11]. Whilst more specifically addressing the shared decision making competences than the previous instruments, it also focuses on observed behaviours (by professionals). In doing so it synthesises these competences into a summary level of involvement but does not distinguish between shared and informed choice models. There may still be value in developing an instrument that can identify and distinguish models of decision making in practice. 2.1. Instruments to assess decision making models Theoretical and empirical research to date has examined models of decision making and has been a key element in the promotion of greater consumer involvement. Further research should explore whether it is feasible to develop a valid and reliable instrument to assess the global decision making models operating in consultations. If it is feasible then it may be possible to achieve greater conceptual clarity about whether certain models are intrinsically more likely in different contexts or whether a range of decision making models is evident. If the former, this could feed into the development of professional development programmes so that the goals of implementing ‘consumer involvement’ are clearer and simplified for professionals, i.e. which models to apply in which circumstances. This would be very pertinent in health care contexts such as cancer treatment, where it is imperative for professionals to have the skills to apply, and to be able to apply them appropriately for the
A. Edwards et al. / Patient Education and Counseling 50 (2003) 33–38
individual concerned. Such an instrument may, however, prove impossible to achieve, with persistent and unacceptable inter-rater differences in interpretation, perhaps reflecting the same issue of a gap between observed behaviours and perceptions inside the participants’ minds. In this scenario, the question about context influencing likely decision models may need to be resolved by mainly theoretical rather than empirical means. Further detailed qualitative analysis, such as with conversation or discourse analytic methods, may, however, shed valuable light on the issues, and will be important. It may, though, confirm that quantification of such interactive process issues, which are essentially based on the perceptions of and between professional and consumer, is always likely to remain illusory! The progress in identifying professional competences for SDM was alluded to earlier [12,13]. Perhaps arising from the lack of implementation of SDM by professionals, there is now increasing attention to the role of consumers in achieving SDM [9]. Research is required to identify the important consumer competences as these may be the key to understanding how SDM can be achieved in consultations and encouraged more widely. The emphasis in training professionals may thus shift from encouraging professionals to demonstrate the competences of SDM to training professionals more specifically to facilitate the SDM competences of patients. Other methods of enhancing consumer participation may also be highly relevant, particularly in the cancer treatment field, such as via the information materials that are plentifully produced. By prompting people to identify and then ask their questions and explore issues in discussion, the competences of SDM may be more likely to happen. In formal terms the decision aids (see later) that are produced for many treatment decisions, including cancer choices such as for prostate cancer, can specifically address these issues of patient involvement and SDM. Such developments should be evaluated in terms of whether they achieve their desired goals. Consequently, as with professional competences, there will be a need for valid instruments to assess patient competences, so that interventions directed more towards consumers can be evaluated. Instruments for consumer competences may also have added value when returning to consider the issue of decision making models. We noted above that attempts should be made to develop a valid instrument to identify decision making models in consultations, or to revisit the theoretical and qualitative empirical understanding of the models. An alternative approach would be to examine how the instruments for consumer and professional competences might be integrated with theoretical or conceptual understanding. This could identify the patterns of competences (behaviours) that may constitute or be a proxy for the specific decision making models, even though these may not be identifiable by raters as a single concept or model in action. The value of any of these possible research developments is that they may firstly enhance our understanding, but secondly we may be able to build this into professional development programmes, and
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make progress towards greater consumer involvement in routine health care encounters.
3. What is a decision aid? In addition to the models of decision making and professional communication skills to achieve consumer involvement in practice, attention also centres on the support materials that may facilitate it. These are often termed ‘decision aids’. Decision aids are defined as “interventions to help people make deliberative choices from health care options by providing information relevant to a person’s health status” [14]. They may be used before, during or after consultations, according to when it is most appropriate or helpful to offer such information and support. Many decision aids have been developed and evaluated, and have been extensively reviewed by O’Connor et al. [14,15] and others [16]. Most focus on information provision and are not theoretically driven. However, some are based on current psychological theories of decision making that address the cognitive processes that operate on information to arrive at a decision. They therefore seek not only to provide information but also to facilitate the cognitive processes that people use on the information to make the decision itself [17]. Despite the advances in understanding and development of decision aids, there is debate about what exactly constitutes a decision aid. At the low technological end of a spectrum there are simple health educational leaflets or ones that seek to enhance participation in health promotion or public health orientated programmes (e.g. screening tests). There is debate about whether these can truly be regarded as decision aids. Increasingly, there are also many variations at the high technological end of the spectrum also. We distinguish decision aids as more standard products that provide information for decision making. They may include formal clarification of users’ values and preferences. However, decision explorers use interactive multimedia formats to let users select different types of information (e.g. narrative, numerical, graphical), different levels of depth in this information and different levels of support in decision making [18]. Each has its place, according to context and users’ needs [19]. It seems likely that many of the treatment decisions in cancer conditions will be well supported by decision aids or particularly explorers. This is because the decision making in practice is frequently influence or even constrained by the context—busy clinics, the shock of a diagnosis, information overload and anxiety generated (see Fig. 2)—all of which make decision making involving patient impractical. Decision aids and explorers offer people the opportunity to take the relevant information away, together with, for example a tape-recording of the consultation with the specialist if this is provided, in order to reflect on the diagnosis, its implications and treatment options. The patient can then explore
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3.2. Barriers and opportunities for using decision aids
Fig. 2. Information overload?
different areas of information and recommendations as they need or desire, and at a pace that they feel comfortable with. 3.1. Effective decision making There is still a need to evaluate these types of materials. The evaluations will address the effects on decision making, in terms of the choices made, resources used and either actual health outcomes or modelling the effects of different choices on potential future health outcomes. The evaluations will also assess whether these information and decision support materials have achieved ‘effective decision making’. As with other concepts described above, there is debate about exactly what this constitutes. In this case it centres on the components of effective decision making, and a distinction between rational and reasoned choice models. In the reasoned choice models, the emphasis is on the way individuals make decisions. An informed choice is described as one that is based on (a) an accurate assessment of the relevant information about alternatives, (b) an assessment of their likelihood and desirability in accord with the individual’s beliefs, and (c) a ‘trade-off’ between these factors [20]. In contrast, rational choice models view decisions as effective if the actual choices are consistent with the theoretically derived maximum expected utility. The latter models are criticised on the grounds that individuals rarely have or are indeed able to use all available information to assess expected utilities. Decisions may be consistent with maximum expected utility but may not have been achieved by assessing it. There are different views about this [20–26]. It is important to resolve this debate, as developments in the field are likely to be dependent on it. With clearer outcome measures the scope for meta-analysis will become wider, and importantly it will be possible then to examine for the principal effect modifiers. That is, it will be possible to examine for more robust evidence than we currently have about which are the most effective strategies, contexts, characteristics and content of decision aids to achieve effective decision making in different settings.
There is an important further issue, however. It relates to all aspects of consumer involvement, but is particularly pertinent when considering decision aids. Despite increasing evidence about their apparent effectiveness, there is also much evidence that implementation—especially outside the academic environments of most research—is limited. Holmes-Rovner has explored the barriers and opportunities for implementing shared decision making and has noted that apparent professional approval for innovations does not equate with participation [6]. She notes also that some of the barriers may relate to physical locations of technical innovations (away from where professionals and patients are consulting). Time pressures are frequently cited as the main problem, as well as costs of implementation (including professional time). There is a need for further research into the barriers and opportunities for implementing SDM and using decision aids, and particularly the possible differential impacts of decision aids available outside or within consultations. That is, the influence of the decision aid-informed consumer on the subsequent interaction with professionals may be highly significant. The availability of appropriate decision aids to consumers before they visit health care professionals may then prove to be a key step towards not just use of decision aids, but wider involvement of consumers in decisions about their treatment or care. Alongside this, however, the research should examine the discourse of using decision aids with patients, or discussing the information and issues raised by them. There is more to it than simply making decision aids available, and we need to understand more about the challenges and successful techniques, so that they can be integrated into the emerging ‘New Medical Conversation’ [27]. Greater understanding about the effective skills and techniques as well as availability of decision aids are likely to be necessary as a means to facilitating implementation. Imparting this understanding to professionals in training programmes is likely to lead to more positive experiences and positive reinforcement. This may encourage professional uptake and widespread use of decision aids. Perhaps more outside consultations, the consumer health informatics (or ‘e-health’ [28]) developments are also important in this sphere of decision aids, or as we have termed them here decision explorers. Interactive technology allows increasingly complex but flexible and tailored packages to be produced. Currently, patients with cancer are perhaps among the most involved and informed of all patients, due to the significance of their condition compared to others. People search at length for information but its quality may be unreliable, or the support it offers to patients somewhat questionable. With increasing internet access, however, good quality information and decision support can be made available to all types of patients, and this is rapidly increasing too. Perhaps this will prove to be the most natural and realistic context for SDM—away from the pressures of clinical practice.
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These decision explorers require full evaluation, including whether they promote effective decision making (however defined), different choices and resource use. However, in addition to these existing areas of outcomes for patients and the health care system, further data are potentially available. The technology can track an individual’s pathway through the package, identifying the nature, sequence and complexity of information accessed by the user. This may add further important empirical data about decision making processes, and add to our conceptual and theoretical understanding. Again, such developments will be able to feed into service developments and training developments for professionals trying to achieve wider implementation of SDM.
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treatments where the stakes are high—patients usually desire much information but their desire for involvement in decision making is more variable. The consequences of getting this balance right or wrong are significant with much to be gained but also much to be lost. Allied to continued work on development and evaluation of decision aids, and decision explorers that use interactive technology, these lessons will be important in identifying how to make progress in the field of consumer involvement. If we can learn these lessons, then wider implementation of SDM or consumer involvement may become a nearer prospect.
References 4. Levers for change The issue about wider implementation is also broader than this. So far the issues we have described have mostly centred on single strategies, usually to professionals to encourage implementation. However, there may be other levers for change, and a fundamental question arises: How is SDM or patient involvement to be promoted most effectively? We have commented on training interventions to professionals and possible interventions to enhance consumer competences in the health care setting. But wider influences may be important too. These include, for example, general or societal influences on consumers such as the live and written media, including traditional publicity and e-health information, and consumer advocate and patient representative groups [29]. Other levers on the health care system include financial control [6]. Payers for health care may be able to demand SDM or evidence of patient involvement as quality measures to achieve higher funding or accreditation rates. Some of these could be more easily implemented as a defined intervention, but there is a need to evaluate the differential effects of these different strategies. This does not suggest that one strategy is likely to be identified as most effective and then become the favoured approach. But it may be valuable to understand which are the most influential and where resources need to be dedicated to try to achieve wider implementation of SDM.
5. Conclusion Considerable achievements have been made in the field of research on shared decision making in the last 5 years. Significant conceptual work on decision making models and instruments to identify them in practice are still required. Specifying consumer competences, developing instruments to assess these, and interventions to enhance them may be an important facet of such work. Clarifying all these aspects may enable those charged with training professionals to improve the content of professional development programmes. This may be particularly important in the field of cancer
[1] Charles C, Gafni A, Whelan T. Shared decision making in the medical encounter: what does it mean? (Or it takes at least two to tango). Soc Sci Med 1997;44:681–92. [2] Charles C, Gafni A, Whelan T. Decision making in the professional–patient encounter: revisiting the shared treatment decision-making model. Soc Sci Med 1999;49:651–61. [3] Guadagnoli E, Ward P. Patient participation in decision making. Soc Sci Med 1998;47:329–39. [4] Coulter A. Partnerships with patients: the pros and cons of shared clinical decision making. J Health Services Res Policy 1997;2:112– 21. [5] Elwyn GJ, Edwards A, Kinnersley P. Shared decision making in primary care: the neglected second half of the consultation. Br J Gen Prac 1999;49:477–82. [6] Holmes-Rovner M, Valade D, Orlowski C, Draus C, Nabozny-Valerio B, Keiser S. Implementing shared decision making in routine practice: barriers and opportunities. Health Expect 2000;3:182–91. [7] Elwyn G, Charles C. Shared decision making: the principles and the competences. In: Edwards A, Elwyn G, editors. Evidence-based patient choice: inevitable or impossible? first ed. Oxford: Oxford University Press; 2001. p. 118–43. [8] Gwyn R, Elwyn G. When is a shared decision not (quite) a shared decision? Negotiating preferences in a general practice encounter. Soc Sci Med 1999;49:437–47. [9] Kim Y, Kols A, Putjuk F, Heerey M, Rinehart W, Elwyn G, et al. Participation by clients and nurse midwives in family planning decision making in Indonesia. Patient Educ Counsel 2003, in press. [10] Elwyn G, Edwards A, Mowle S, Wensing M, Wilkinson C, Kinnersley P, et al. Measuring the involvement of patients in shared decision making: a systematic review of instruments. Patient Educ Couns 2001;43:5–22. [11] Elwyn G, Edwards A, Wensing M, Hood K, Atwell C, Grol R. Fleeting glimpses: measuring shared decision making in primary care using the OPTION instrument. Qual Safety Health Care 2002, in press. [12] Elwyn G, Edwards A, Kinnersley P, Grol R. Shared decision making and the concept of equipoise: defining the ‘competences’ of involving patients in health care choices. Br J Gen Prac 2000;50:892–9. [13] Towle A, Godolphin W. Framework for teaching and learning informed shared decision making. Br Med J 1999;319:766–71. [14] O’Connor AM, Rostom A, Fiset V, Tetroe J, Entwistle V, Llewelyn-Thomas H, et al. Decision aids for patients facing health treatment or screening decisions: systematic review. BMJ 1999;319:731–4. [15] O’Connor A, Fiset V, Rosto A, Tetroe J, Entwistle V, Llewellyn-Thomas H, et al. Decision aids for people facing health treatment or screening decisions [Cochrane Review]. Cochrane Library, Issue 1. Update Software; 2002.
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[16] Molenaar S, Spranger sM, Postma-Shhuit C, Rutgers E, Noorlander J, et al. Feasibility and effects of decision aids. Med Decision Making 2000;20:112–27. [17] Feldman-Stewart D, Brundage MD, van Manen L. A decision aid for men with early stage prostate cancer: theoretical basis and a test by surrogate patients. Health Expect 2001;4:221–34. [18] Wright P. Document-based decision-making. In: Rouet JF, Levonen A, Biardeau A, editors. Multimedia learning: cognitive and instructional issues. Amsterdam: Pergamon Press; 2001. p. 31–43. [19] Edwards A, Elwyn G. The potential benefits of decision aids in clinical medicine. J Am Med Assoc 1999;282:779–80. [20] Bekker H. Genetic testing: facilitating informed choices. In: Encyclopaedia of the human genome. Nature Publishing Group; 2002. [21] Bekker H. Why decision analysis facilitates decision making: linking process and outcome measures. In: Proceedings of the 1st International Conference on Shared Decision Making in Health Care. Oxford; 2001. [22] Marteau TM, Dormandy E, Michie S. A multi-dimensional measure of informed choice for use in Down’s Syndrome screening. Health Expect 2001;4:99–108.
[23] Entwistle VA, Sowden AJ, Watt IS. Evaluating interventions to promote patient involvement in decision making: by what criteria should effectiveness be judged? J Health Serv Res Policy 1998;3:100–7. [24] O’Connor AM. Validation of a decisional conflict scale. Med Decision Making 1995;15:25–30. [25] Edwards A, Elwyn G. How should ‘effectiveness’ of risk communication to aid patients’ decisions be judged? A review of the literature. Med Decision Making 1999;19:428–34. [26] Edwards A, Elwyn G, Hood K, Robling M, Atwell C, Russell I, et al. The development of COMRADE: a patient-based outcome measure to evaluate the effectiveness of risk communication and treatment decision-making in consultations. Patient Educ Counsel 2003, in press. [27] Mazur D. The new medical conversation. Boulder, Connecticut: Rowman and Littlefield; 2002. [28] Eysenbach G. Recent advances: consumer health informatics. Br Med J 2000;320:1713–6. [29] Edwards A, Elwyn G. Understanding risk, and lessons for clinical risk communication about treatment preferences. Qual Health Care 2001;10(Suppl I):i9–13.
Manufactured but not imported: new directions for research in shared decision making support and skills Adrian Edwards∗ , Rhodri Evans, Glyn Elwyn Department of Primary Care, Swansea Clinical School, University of Wales, Singleton Park, Swansea, Wales SA2 8PP, UK
Abstract Significant conceptual work on shared decision making has taken place but there are still significant challenges in achieving it in routine clinical practice. This paper outlines what research has identified to date that may promote shared decision making, and the further research that is required to enable continuing progress. Greater understanding of the models of decision making and instruments to identify them in practice are still required. Specifying consumer competences, developing instruments to assess these and interventions to enhance them may also be important. Clarifying all these aspects may enable those charged with training professionals to improve the content of professional development programmes. This may be particularly important in the field of cancer treatments where the stakes are high-patients usually desire much information but their desire for involvement in decision making is more variable. The consequences of getting this balance right or wrong are significant with much to be gained or lost. Continued development and evaluation of decision aids and decision explorers that use interactive technology will also be important in identifying how to progress with consumer involvement. If we can learn these lessons, then wider implementation of shared decision making or consumer involvement may become a nearer prospect. © 2003 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Shared decision making; Consumer involvement; Decision aids
1. Introduction The movement towards greater consumer involvement in decisions about their treatment or health care options— often referred to as ‘shared decision making (SDM)’—has reached an important and interesting juncture. It is over 5 years since the seminal paper by Charles et al. [1] was published subsequently supported by many other publications from the same and other key authors in the field [2–4]. One can probably summarise developments in the field by saying that the initiative to promote SDM has spread across many of the academic institutions, including both researchers and educationalists, and is well supported likewise by consumer representative and advocate organisations. However, in the reality of ordinary health care practice, away from these ‘ivory towers’, SDM remains a relative rarity or at best a novelty whose place is uncertain [5,6]. Attention has therefore begun to focus on the reasons for this apparent gap between theory, policy and education and the reality of health care practice. Considerable advances have been made to date in research in this field and a number of important areas for fur∗ Corresponding author. Tel.: +44-1792-513062; fax: +44-1792-513423. E-mail address: [email protected] (A. Edwards).
ther research are being identified which may help to understand issues relating to implementation. In doing so they may also take forward the understanding of SDM conceptually.
2. Models of decision making The first area of research concerns models of decision making. Charles et al. identified three broad models of decision making—paternalism, shared decision making and informed choice [1]—see Fig. 1. The distinction between the latter two is where much difficulty arises. From the theoretical perspective, the informed choice model comprises giving information to consumers who, with their preferences and utilities then have the required elements with which to make an informed decision [7]. The professional has not however contributed his or her opinions or recommendations. In the SDM model, both professionals and consumers contribute information and opinions so that decisions take account of both recommendations and preferences, and the process is characterised by interaction [7]. Despite this delineation of three models it appears hard to distinguish them in practice, particularly between SDM and informed choice. One explanation for this may be that the three models are not compartments but part of a spectrum:
0738-3991/03/$ – see front matter © 2003 Elsevier Science Ireland Ltd. All rights reserved. doi:10.1016/S0738-3991(03)00077-6
34
A. Edwards et al. / Patient Education and Counseling 50 (2003) 33–38
Fig. 1. Models of decision making [7].
from paternalism through SDM to informed choice. Where an individual consultation sits on this continuum is a subjective view (at least with current research methods). These views inevitably vary between people assessing the consultation. A large part of this variation probably stems from the fact that the assessment must be based on observations of the verbal and non-verbal communication between consumer and professional. The level of involvement, though, is a function of the perceptions of the participating consumer and professional—an altogether harder aspect to gauge in assessing consultations. Alternatively, it may be that SDM and informed choice are not identifiably separate models, but are more likely to be dictated by the context of the consultation. Efforts to achieve greater consumer involvement in decision making may intrinsically veer more towards the informed choice in some settings. Examples include family planning decisions, choices about antenatal screening tests, or treatments for long-term conditions which are important but generally not life threatening, such as menorrhagia, menopausal symptoms, and prostatism. In these scenarios, the consumer is most likely to be making the decision, once provided with relevant information. As personal choices, the professional’s view is likely to be less significant than in other contexts. These others include, for example making decisions about chronic treatments that affect future risk of disease, such as hypertension and ischaemic heart disease, or considering screening tests such as mammography or Papanicolau smears. In these the harm and benefit profile of the available treatments or tests may be important in the decision making and weighed by both consumer and professional [8]. Still further, there may be other contexts where patients are more likely to prefer the balance in decision making to be with the professional. Examples include acute or emergency care, or—and particularly relevant to this publication—treatment decisions in major illnesses such as cancer, in which the significance of the illness, treatment options and outcomes is so great. In these scenarios, some
patients still actively prefer to lead and to take decisions, but many others prefer to be led by professionals, even if they might have been more involved in the types of decisions noted above (personal and lifestyle choices, etc.). This may be explained by the fact that a significant ‘side-effect’ of the decision making process can be regret experienced if one’s decisions lead to adverse outcomes—this is relatively spared when someone else has taken on the responsibility of decision making. However, these variations are not easily distinguished in clinical practice or research. It may be that separating the SDM and informed choice models is not actually justified. The context may make one model automatically more likely. The important issue is whether the apparent distinction of these models in the first few years of the consumer involvement movement has led to confusion among health care professionals [9]. Confusion could give rise to disillusionment as professionals try unsuccessfully to implement an inappropriate model, such as shared decision making in family planning contexts where the ‘natural’ model of involving patients effectively is informed choice. A third possible explanation for the difficulty in distinguishing between SDM and informed choice may lie in the weaknesses of instruments available to assess decision making models in consultations. The range of instruments available has been reviewed elsewhere [10]. A new instrument specifically to assess levels of involvement was developed by Elwyn et al. [11]. Whilst more specifically addressing the shared decision making competences than the previous instruments, it also focuses on observed behaviours (by professionals). In doing so it synthesises these competences into a summary level of involvement but does not distinguish between shared and informed choice models. There may still be value in developing an instrument that can identify and distinguish models of decision making in practice. 2.1. Instruments to assess decision making models Theoretical and empirical research to date has examined models of decision making and has been a key element in the promotion of greater consumer involvement. Further research should explore whether it is feasible to develop a valid and reliable instrument to assess the global decision making models operating in consultations. If it is feasible then it may be possible to achieve greater conceptual clarity about whether certain models are intrinsically more likely in different contexts or whether a range of decision making models is evident. If the former, this could feed into the development of professional development programmes so that the goals of implementing ‘consumer involvement’ are clearer and simplified for professionals, i.e. which models to apply in which circumstances. This would be very pertinent in health care contexts such as cancer treatment, where it is imperative for professionals to have the skills to apply, and to be able to apply them appropriately for the
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individual concerned. Such an instrument may, however, prove impossible to achieve, with persistent and unacceptable inter-rater differences in interpretation, perhaps reflecting the same issue of a gap between observed behaviours and perceptions inside the participants’ minds. In this scenario, the question about context influencing likely decision models may need to be resolved by mainly theoretical rather than empirical means. Further detailed qualitative analysis, such as with conversation or discourse analytic methods, may, however, shed valuable light on the issues, and will be important. It may, though, confirm that quantification of such interactive process issues, which are essentially based on the perceptions of and between professional and consumer, is always likely to remain illusory! The progress in identifying professional competences for SDM was alluded to earlier [12,13]. Perhaps arising from the lack of implementation of SDM by professionals, there is now increasing attention to the role of consumers in achieving SDM [9]. Research is required to identify the important consumer competences as these may be the key to understanding how SDM can be achieved in consultations and encouraged more widely. The emphasis in training professionals may thus shift from encouraging professionals to demonstrate the competences of SDM to training professionals more specifically to facilitate the SDM competences of patients. Other methods of enhancing consumer participation may also be highly relevant, particularly in the cancer treatment field, such as via the information materials that are plentifully produced. By prompting people to identify and then ask their questions and explore issues in discussion, the competences of SDM may be more likely to happen. In formal terms the decision aids (see later) that are produced for many treatment decisions, including cancer choices such as for prostate cancer, can specifically address these issues of patient involvement and SDM. Such developments should be evaluated in terms of whether they achieve their desired goals. Consequently, as with professional competences, there will be a need for valid instruments to assess patient competences, so that interventions directed more towards consumers can be evaluated. Instruments for consumer competences may also have added value when returning to consider the issue of decision making models. We noted above that attempts should be made to develop a valid instrument to identify decision making models in consultations, or to revisit the theoretical and qualitative empirical understanding of the models. An alternative approach would be to examine how the instruments for consumer and professional competences might be integrated with theoretical or conceptual understanding. This could identify the patterns of competences (behaviours) that may constitute or be a proxy for the specific decision making models, even though these may not be identifiable by raters as a single concept or model in action. The value of any of these possible research developments is that they may firstly enhance our understanding, but secondly we may be able to build this into professional development programmes, and
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make progress towards greater consumer involvement in routine health care encounters.
3. What is a decision aid? In addition to the models of decision making and professional communication skills to achieve consumer involvement in practice, attention also centres on the support materials that may facilitate it. These are often termed ‘decision aids’. Decision aids are defined as “interventions to help people make deliberative choices from health care options by providing information relevant to a person’s health status” [14]. They may be used before, during or after consultations, according to when it is most appropriate or helpful to offer such information and support. Many decision aids have been developed and evaluated, and have been extensively reviewed by O’Connor et al. [14,15] and others [16]. Most focus on information provision and are not theoretically driven. However, some are based on current psychological theories of decision making that address the cognitive processes that operate on information to arrive at a decision. They therefore seek not only to provide information but also to facilitate the cognitive processes that people use on the information to make the decision itself [17]. Despite the advances in understanding and development of decision aids, there is debate about what exactly constitutes a decision aid. At the low technological end of a spectrum there are simple health educational leaflets or ones that seek to enhance participation in health promotion or public health orientated programmes (e.g. screening tests). There is debate about whether these can truly be regarded as decision aids. Increasingly, there are also many variations at the high technological end of the spectrum also. We distinguish decision aids as more standard products that provide information for decision making. They may include formal clarification of users’ values and preferences. However, decision explorers use interactive multimedia formats to let users select different types of information (e.g. narrative, numerical, graphical), different levels of depth in this information and different levels of support in decision making [18]. Each has its place, according to context and users’ needs [19]. It seems likely that many of the treatment decisions in cancer conditions will be well supported by decision aids or particularly explorers. This is because the decision making in practice is frequently influence or even constrained by the context—busy clinics, the shock of a diagnosis, information overload and anxiety generated (see Fig. 2)—all of which make decision making involving patient impractical. Decision aids and explorers offer people the opportunity to take the relevant information away, together with, for example a tape-recording of the consultation with the specialist if this is provided, in order to reflect on the diagnosis, its implications and treatment options. The patient can then explore
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3.2. Barriers and opportunities for using decision aids
Fig. 2. Information overload?
different areas of information and recommendations as they need or desire, and at a pace that they feel comfortable with. 3.1. Effective decision making There is still a need to evaluate these types of materials. The evaluations will address the effects on decision making, in terms of the choices made, resources used and either actual health outcomes or modelling the effects of different choices on potential future health outcomes. The evaluations will also assess whether these information and decision support materials have achieved ‘effective decision making’. As with other concepts described above, there is debate about exactly what this constitutes. In this case it centres on the components of effective decision making, and a distinction between rational and reasoned choice models. In the reasoned choice models, the emphasis is on the way individuals make decisions. An informed choice is described as one that is based on (a) an accurate assessment of the relevant information about alternatives, (b) an assessment of their likelihood and desirability in accord with the individual’s beliefs, and (c) a ‘trade-off’ between these factors [20]. In contrast, rational choice models view decisions as effective if the actual choices are consistent with the theoretically derived maximum expected utility. The latter models are criticised on the grounds that individuals rarely have or are indeed able to use all available information to assess expected utilities. Decisions may be consistent with maximum expected utility but may not have been achieved by assessing it. There are different views about this [20–26]. It is important to resolve this debate, as developments in the field are likely to be dependent on it. With clearer outcome measures the scope for meta-analysis will become wider, and importantly it will be possible then to examine for the principal effect modifiers. That is, it will be possible to examine for more robust evidence than we currently have about which are the most effective strategies, contexts, characteristics and content of decision aids to achieve effective decision making in different settings.
There is an important further issue, however. It relates to all aspects of consumer involvement, but is particularly pertinent when considering decision aids. Despite increasing evidence about their apparent effectiveness, there is also much evidence that implementation—especially outside the academic environments of most research—is limited. Holmes-Rovner has explored the barriers and opportunities for implementing shared decision making and has noted that apparent professional approval for innovations does not equate with participation [6]. She notes also that some of the barriers may relate to physical locations of technical innovations (away from where professionals and patients are consulting). Time pressures are frequently cited as the main problem, as well as costs of implementation (including professional time). There is a need for further research into the barriers and opportunities for implementing SDM and using decision aids, and particularly the possible differential impacts of decision aids available outside or within consultations. That is, the influence of the decision aid-informed consumer on the subsequent interaction with professionals may be highly significant. The availability of appropriate decision aids to consumers before they visit health care professionals may then prove to be a key step towards not just use of decision aids, but wider involvement of consumers in decisions about their treatment or care. Alongside this, however, the research should examine the discourse of using decision aids with patients, or discussing the information and issues raised by them. There is more to it than simply making decision aids available, and we need to understand more about the challenges and successful techniques, so that they can be integrated into the emerging ‘New Medical Conversation’ [27]. Greater understanding about the effective skills and techniques as well as availability of decision aids are likely to be necessary as a means to facilitating implementation. Imparting this understanding to professionals in training programmes is likely to lead to more positive experiences and positive reinforcement. This may encourage professional uptake and widespread use of decision aids. Perhaps more outside consultations, the consumer health informatics (or ‘e-health’ [28]) developments are also important in this sphere of decision aids, or as we have termed them here decision explorers. Interactive technology allows increasingly complex but flexible and tailored packages to be produced. Currently, patients with cancer are perhaps among the most involved and informed of all patients, due to the significance of their condition compared to others. People search at length for information but its quality may be unreliable, or the support it offers to patients somewhat questionable. With increasing internet access, however, good quality information and decision support can be made available to all types of patients, and this is rapidly increasing too. Perhaps this will prove to be the most natural and realistic context for SDM—away from the pressures of clinical practice.
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These decision explorers require full evaluation, including whether they promote effective decision making (however defined), different choices and resource use. However, in addition to these existing areas of outcomes for patients and the health care system, further data are potentially available. The technology can track an individual’s pathway through the package, identifying the nature, sequence and complexity of information accessed by the user. This may add further important empirical data about decision making processes, and add to our conceptual and theoretical understanding. Again, such developments will be able to feed into service developments and training developments for professionals trying to achieve wider implementation of SDM.
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treatments where the stakes are high—patients usually desire much information but their desire for involvement in decision making is more variable. The consequences of getting this balance right or wrong are significant with much to be gained but also much to be lost. Allied to continued work on development and evaluation of decision aids, and decision explorers that use interactive technology, these lessons will be important in identifying how to make progress in the field of consumer involvement. If we can learn these lessons, then wider implementation of SDM or consumer involvement may become a nearer prospect.
References 4. Levers for change The issue about wider implementation is also broader than this. So far the issues we have described have mostly centred on single strategies, usually to professionals to encourage implementation. However, there may be other levers for change, and a fundamental question arises: How is SDM or patient involvement to be promoted most effectively? We have commented on training interventions to professionals and possible interventions to enhance consumer competences in the health care setting. But wider influences may be important too. These include, for example, general or societal influences on consumers such as the live and written media, including traditional publicity and e-health information, and consumer advocate and patient representative groups [29]. Other levers on the health care system include financial control [6]. Payers for health care may be able to demand SDM or evidence of patient involvement as quality measures to achieve higher funding or accreditation rates. Some of these could be more easily implemented as a defined intervention, but there is a need to evaluate the differential effects of these different strategies. This does not suggest that one strategy is likely to be identified as most effective and then become the favoured approach. But it may be valuable to understand which are the most influential and where resources need to be dedicated to try to achieve wider implementation of SDM.
5. Conclusion Considerable achievements have been made in the field of research on shared decision making in the last 5 years. Significant conceptual work on decision making models and instruments to identify them in practice are still required. Specifying consumer competences, developing instruments to assess these, and interventions to enhance them may be an important facet of such work. Clarifying all these aspects may enable those charged with training professionals to improve the content of professional development programmes. This may be particularly important in the field of cancer
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