Few healthcare providers would argue against being patient- and family-centred in our care. While this is an obvious ethic to assert, it is challenging to live up to. Most modern definitions of evidence-based healthcare include patient preferences and values as part of clinical decision-making.1,2 Yet descriptions of evidence-based practice do not explicitly integrate the role of patient preferences in the steps or phases of the process.3 Rather, the stages generally involve stating a specific question, searching for and appraisal of information, synthesis of the included works, application of the best evidence in decision-making and evaluation of outcomes. Clinicians, armed with the best available evidence, use their clinical expertise to intervene. Presumably, clients patiently await the scientist's, reviewer's and guideline developer's verdict before becoming part of the decision that affects their health and well-being. This approach is common but inconsistent with the intent of evidence-based healthcare.

When clients are viewed as consumers, they use information at the end of healthcare supply chain just like a purchaser of technology or any other product. This leaves them with far fewer options to influence their own care than if they were involved in each stage of the knowledge supply chain. That is, clients could become true partners if they were engaged when researchers discover and test, reviewers synthesise, guideline developers translate and clinicians use knowledge.

Models that integrate the best available evidence with patients' and families' preferences are emerging.3,4 However, evidence related to how to best integrate patients and their families in evidence-based decision-making and how to encourage healthcare providers to include them in shared decision-making lags.4 While patient preferences in the evidence-based decision-making process may be desirable, much remains to be learned about how to realise this ethic.

In this issue, authors have reviewed the effect of traditions that reflect a clinician-centred practice. For example, Moola and Lockwood reviewed the effectiveness of the management or prevention of hypothermia within the adult perioperative environment.5 They found that active rewarming strategies are more effective than passive rewarming and that multiple strategies may be optimal in prolonged surgeries or older surgical patients. They urge future researchers to conduct stronger trials to answer the remaining questions. Perhaps, there is also opportunity for the knowledge users (clinicians and patients) to become active participants in the planning, conduct, analysis and interpretation of this work to address both the urgent clinician-centric and the patient-centred questions and outcomes. If clinicians and patients become part of the research, review and guideline teams, both their preferences and knowledge needs might be met more effectively and efficiently. The Canadian Institutes of Health Research identify six opportunities for knowledge translation throughout the research, dissemination, contextualisation and application of knowledge cycle.6 If knowledge users become part of the cycle, they may be less likely to be left with constrained choices than they are as end of supply chain consumers.

Jayasekara reviewed the effectiveness of educational components and strategies associated with insulin pump therapy on outcomes like glycaemic control, complications and knowledge.7 Clearly, the researchers sought to find effective methods to empower clients through education. Their ultimate goal was to enable patients to better self-manage their insulin pumps and diabetes. Yet Jayasekara found only a few studies and these used a heterogeneous mix of educational and training efforts. The review supports, although with limited confidence, recommendations about the content of teaching but little research about how patients with an insulin pump prefer to learn about managing them. Perhaps the next step is to include patients with insulin pumps in the design of the research question and methods.

Ciufo, Hader and Holly reviewed visitation models in adult critical care units within a context of patient- and family-centred care.8 One might guess that given the review question, they would have found research that clearly centred on the patients' and families' preferences. Despite a thorough and exhaustive search, one of Ciufo, Hader and Holly's main findings is that nurses believe that even though visiting is important, flexible and fluid visiting hours can impede work flow.8 The review aptly revealed the tension between nurses' understanding the patients' and families' needs and preferences and the nurses wanting to control visitation. The reviewers integrated quantitative and qualitative evidence in their comprehensive review to better answer both questions of effectiveness and meaning. Healthcare providers need more comprehensive systematic reviews that will reveal the evidence to inform our understanding of patient and family preferences.

National policy-makers are calling for clinicians and organisations to shift their focus on patient and family preferences and satisfaction. In the United States, patient satisfaction with care is beginning to influence how providers and organisations will be reimbursed. In the fall of 2012, the Centers for Medicare and Medicaid Services will adjust reimbursement for services based on patient satisfaction scores.9 Value-based purchasing supports the goals of the 'Partnership for Patients' aimed at improving the quality and safety of healthcare for Americans. Patient satisfaction scores will determine part of the value of care and subsequent reimbursement. 'Patient as partner' is a key theme in several of the provisions embedded in the 2010 Affordable Care Act.10 In addition to the emphasis on value and quality, the act established a new non-governmental organisation called the Patient-Centered Outcome Research Institute. The governance and methodology groups have been established for less than 1 year. Fundamental to their goals is that comparative effectiveness research 'should consider comprehensive measures, addressing patient preferences, health outcomes and quality of life', and there should be an emphasis on patients as partners in evidence-based decision-making.10

Perhaps the United States lags behind other nations who have already engaged patients in the generation, synthesis and translation of evidence. Americans and citizens around the world need greater influence and engagement during the decision-making and work of scientists, reviewers and clinicians in order to direct and speed the transfer of the evidence. Comprehensive reviews like those in this issue will be more robust and informative when knowledge users are partners rather than 'supply chain' recipients.

References