This issue includes a range of articles at the heart of the Journal’s agenda. Articles explore how we should understand communication between health professionals and patients to shape decisions and ensure understanding. This also relates to how we can develop decision aids that incorporate not only the expertise of clinicians but are framed in relation to what patients’ say they need. Articles in this issue go on to discuss the development and validation of a range of measures based on patient experience as part of on-going methodological development to incorporate patients and service users as central to the research process before turning to evidence of people’s experience of urgent and emergency care and the impact of cancer on everyday life. The final article in the issue looks at policy and the ways that patients, members of the public, governmental and non-governmental stakeholders can actively inform policy and implementation.

The importance of the community pharmacy as a source of health advice and information is a recurrent theme in health policy. More importantly, do the interactions between patients and those dispensing their prescription ensure that medicines are taken in the right way and that side-effects are understood. Emmerton et al.1 explored the issue of health literacy amongst community pharmacy consumers in south-east Queensland, Australia. They found that on the whole there was a high level of health literacy but that there was less understanding of warning labels commonly used on dispensed medications.

Communication between doctors and patients can be a locus for shared decision making (SDM) but can also limit the scope for a patient to be actively involved in their own treatment. Kasper et al.2 explore present an epistemological analysis of the SDM and argue that a different way of understanding not only the nature of what is communicated but also how uncertainty and likelihood can be discussed to enable doctors to become enablers rather than definers of patient’s decisions. In the next article, Mendel et al.3 explore the influence that physicians have on decisions concerning treatments by a group of people in Germany with schizophrenia and multiple sclerosis. Using a scenario about drug choice and comparing patient’s initial choice and that following information about physician’s advice, they find clear evidence that a significant proportion of the subjects changed their decision and that this was related to how certain they had been in the first place and how much they trusted their physician.

The use of decision aids to support doctor–patient consultations particularly in relation to uncertainty is a growing area of research. There is little consensus on how decision aids should be developed. Durand et al.4 studied the decision by women to undertake amniocentesis, and working with women in this situation, researchers and health professionals considered a range of different algorithms that are commonly used. They conclude that deliberations can be supported by decision aids and that the translation of theoretical constructs into graphic-based deliberation tools is an excellent approach to the challenges of such development.

Quality of Life is notoriously difficult to measure and even more so in ways that are related to specific health-care interventions. Increasingly, direct patient experience is being used as a measure of the quality of interventions and patient-related outcome measures (PROMs) replacing standardized quality of life scores. Skevington et al.5 developed WHOQOL-BREF as a generic measure of individual quality of life using a bottom-up approach grounded in the views of patients and potential service users. There article reports the validation of this measure in a diverse sample of more than 4000 UK patients. Another area where PROMs are being used relates to cultural sensitivity. Nápoles et al.6 report the finding from the development of a Clinicians Cultural Sensitivity Survey for Latino patients in California.

The experience of emergency and urgent care is particularly difficult to document given the unplanned nature of the use of these services. Knowles et al.7 report the results of survey of a random population samples in the UK exploring the experiences and views of the emergency and urgent care system. The results emphasize that people experience a number of different services as part of their journey, and this has implications for conceptualising and planning provision in terms of systems rather than services.

Much research on patient and public involvement has focused on the experience of cancer but much of this focuses on the impact of diagnosis and treatment and far less is about how people manage living with cancer. As part of an attempt to research areas highlighted as important by people with cancer, Okamoto et al.8 undertook a systematic appraisal of the literature relating to the impact of cancer in everyday life. They identify a range of particular areas that have been studied and identify some gaps. In part, their review also reveals the dominance of breast cancer as the condition most studied and the limited dissemination beyond academia of many research findings.

Patient and public involvement in the development of policy is rare, and even rarer is academic accounts of processes or events which document the ways that members of the public and service users shape the content and implementation of policy. Thailand has been a leading location for innovation in health reform and policy development and Rasanathan et al.9 in their article document the process and initial outcomes of the first National Health Assembly held in Bangkok in 2008 as an innovative example of health policy making.

I particularly welcome the continue internationalization of the contributions and the broad array of arenas where patients, service users and the public are playing an active role in shaping their own treatment, the organization and delivery of services and even influencing prospectively the policy that frames health-care systems.


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