Strategies to ensure that people can access good quality information and other forms of support for decision-making will require resources if they are to be well implemented. There are costs associated with developing, providing, using and dealing with the consequences of using interventions to support different forms of patient participation in treatment decision-making.
Policy-makers and managers at various levels have to decide how much health care funding should be invested into which decision-support strategies and interventions. There is some concern that, particularly in publicly funded health care systems, funding has not followed in support of policy rhetoric about the importance of informing people and enabling them to participate in decisions about their care. If information and other facilitators of such participation are seen as an integral part of good quality health care, then funding should be available for them. However, the opportunity costs of such investments must be taken into account and policy-makers will need to consider how best to deal with and present them. For example, in a resource limited health service, additional funding for interventions to promote patients’ participation in treatment decision-making could be top-sliced from across a range of health care budgets, or it could be made available by selectively reducing a few specific budgets.
It is increasingly accepted that decisions about investment in health care technologies should be based on consideration, among other things, of research evidence about their effectiveness. There is a strong case for arguing that decisions concerning investment in particular strategies, or interventions aiming to provide information and support patient participation in treatment decision-making, should also be underpinned by research evidence about their effectiveness.
Evaluations are, however, as the name suggests, value-laden, even when they take the form of rigorous randomized controlled trials. Researchers make decisions about the type of control against which an intervention will be compared, and about the types of criteria that will be used to judge their effectiveness (the processes and outcomes that will be assessed, the ways in which they will be measured and the time period over which they will be measured).
Strategies and interventions to support decision-making might impact on a range of processes and outcomes, including: knowledge and understanding; who contributes in what way to decision-making; what factors influence the choice made; the lengths of (and hence the costs and number of other available) consultations; the quality of the decision made; professional-patient relationships (in both the short and longer term); the delivery of health care; health-related behaviours; the outcomes of health care; people’s general sense of wellbeing; and the expectations and satisfaction of patients, their families and health professionals with various aspects of health care and its outcomes.12, 17 People will have different opinions about which of these criteria are most important and how they value particular effects.
Different outcomes may be more or less important to policy-makers operating in different contexts. For example, if professional associations focus on their members’ relationships with individual patients in specific clinical encounters, they are likely to place a high value on individuals’ perceptions of the processes and outcomes of the care that they themselves deliver and receive. Policy-makers focusing on the health care system or the health of a nation as a whole, however, may place greater emphasis on the costs and broader system impacts. An intervention may perform very well against some criteria, yet poorly against others.
Research evidence about the effectiveness of (interventions to promote) particular approaches to treatment decision-making in particular circumstances is currently limited. A recent systematic review of the effects of decision support interventions for people facing treatment decisions suggests that we can be fairly confident that evidence-based decision aids can increase people’s knowledge and understanding about their condition and their active participation in decision-making. Their impact on choices made is variable and may depend in part on the baseline levels of use of the different options.18 Many other aspects of their effects, including their impact on health care costs and outcomes, require further research. The extent to which particular aids are effective, appropriate and acceptable for people from different social and cultural groups, also needs to be investigated.
Research is also needed to improve our ability to assess various aspects of the quality of particular interventions and to investigate the relative merits of different approaches to their development. The development of decision aids can be skill-and resource-intensive. Developers must grapple with issues relating to identifying the information to provide, how to present it and how to facilitate the decision-making process, for example by structuring decisions and providing values clarification exercises.19 Development must therefore be underpinned by research to investigate, for example, the information priorities of patient populations and the ways in which people understand and use statistical information when it is presented in different ways.
In addition to allocating funds to the development and provision of interventions to support patient participation in decision-making, policy makers might want to consider setting quality standards and regulating the processes that are used to develop them. However, the current knowledge base may limit confidence in the validity of any standards that are developed.