Editorial

This issue includes a diverse set of articles that engage with shared decision making and the difference between patients and members of the public, different methodological and measurement challenges as well as the importance of involvement as a mechanism for changing institutional cultures.

The first set of articles examines patient treatment preferences. Drawing on semi‐structured interviews with a convenience sample of 25 chronic pain patients from a Dutch rehabilitation centre, Cranen and colleagues explore their views of the different approaches to telerehabilitation.1 The findings emphasize the importance of face‐to‐face care particularly at the initial treatment phase to generate confidence and support. Overall, respondents saw value in telerehabilitation as a complementary or follow‐up treatment, rather than the primary mode of treatment. Taking a different approach, Bowling and others used a self‐administered postal questionnaire survey of 222 angina patients assessed changes in treatment preferences over an 18‐month period based on a sample drawn from seven primary care practices in England.2 Respondents were provided a patient information booklet that described the risks and benefits of angina treatments before completing the initial questionnaire. Overall, there was little change in preference scores which suggested that these were based on initially stable attitudes.

The third article also examines how people express and enact their preferences in terms of shared decision making, but from the perspective of the physician.3 Harmann and a research team from the Technische Universität München and the University of Graz in Austria surveyed 238 psychiatrists and 169 vascular surgeons to identify behaviours that enabled or undermined shared decision making. There was little difference between the views of physicians from the two very different specialities and did not differentiate between patient behaviours that are useful for SDM in particular and patient behaviours that help to reach medically sound decisions. The respondents did find patients who disagreed with them, sought information from the internet or a second opinion annoying.

The fourth article seeks to understand some of the differences between patients and the public in terms of scores on the standardized measure of health state UK EQ‐5D.4 Peeters, Vliet Vlieland and Stiggelbout demonstrate in their study that members of the general public concentrate aspects of life that are negatively influenced by health, while patients consider both the negative and positive aspects of their lives. This has implications for the use of this widely deployed scale but also in emphasizing the need to conceptualize patients and members of the public differently. Hirsch and colleagues also explore the application of a scale in research through validating the German version of the ‘observing patient involvement’ scale (OPTION) by analysing 40 video recordings of primary care consultations dealing with counselling in cardiovascular prevention.5

The second set of articles engages with patient and public involvement in research and defining clinical guidelines. Callard, Rose and Wykes6 argue for the need to reconceptualize the model of translational research as an interlocking loop rather than as a pipeline where service user and stakeholder involvement are an integral aspect to all of its elements. They suggest that research is more than a series of scientific procedures and is embedded with political and ethical issues that require that service users should be party to deliberations on research goals and priorities. Lisa Ashmore7 argues that charities play a key role in mediating the normalization of technologies into health‐care through discourses that empower various publics to demand the newest technologies. Tong and colleagues also engage with how to shape clinical behaviour and describe a targeted approach for involving parallel consumer workshops to actively engage service users in clinical guideline development in a hospital in Sydney.8 Taken together, these articles highlight the relevance and impact of patient and public involvement to shape clinical practice and stress the importance of engagement in the early phase of a project.

In part, these articles are arguing for a change in clinical culture, and the next two articles focus on issues of patient safety. Ocloo and Fulop9 argue for the need to recognize the centrality of power inequality within the clinical setting in order to build a patient safety culture. One particular way forward in the UK is the Yellow Card Scheme for reporting adverse drug reactions and is explored by Anderson, colleagues and the Yellow Card Study Collaboration.10 This study explored three different ways of reporting adverse drug reactions (paper, internet and telephone) using ‘think aloud’ sessions with 40 members of the general public. They conclude that the adaptation of a system designed for health professionals rather than designing a system that is specific for patients has led to a number of problems and that the ‘think aloud’ method identified a range of potential improvements.

In the final article in this issue, Stephen Buetow11 argues for the need to consider ways of creating concordance between the particularities of individual nation states and universal notions of rights to health. This reminds us of the need to find ways of linking individual micro‐level practice with global concerns and provides a challenge for researchers, health‐care professionals and policy makers.