Editorial

Abstract

The articles in this issue range from a series of preferences and decision making by patients, issues of e-health and the Internet, user involvement in research and methodological development. For all the authors, understanding not only preferences from patients and service users but how these influence activity is a central concern. Increasingly, the Internet is a source of information and a mode of communication. Lewis et al.1 studied what information obese Australians sought on the Internet and how it is related to weight loss solutions and health risks. The desire to join a community and engender support was not only a key aim of the Internet usage by participants and the ‘Fatosphere’ but also created vulnerability to unscrupulous advertisers. The extent to which the Internet holds the potential through e-health to become integral to how health care is delivered continues to be debated, but concerted implementation is far less clear as is the desire of service users for such changes. Using citizen juries, King et al.2 document the potential value of e-health to people in Scotland. They conclude that such innovations while potentially valuable should be an addition rather than a replacement for more traditional health-care delivery. Pharmacy services too have the potential to play a more central role in health systems. Understanding what people want from pharmacy services should be central to their development but, as Renberg et al.3 illustrate in Sweden, people have very different normative expectations of pharmacy encounters. Shared decision making is dependent on health professional’s support and communication. Upton et al.4 studied practice nurses in the United Kingdom and demonstrate that paternalism, the need to meet targets, compromised constrained power sharing in decisions about asthma management. By contrast, Cook et al.5 argue that in offering prognostic tests, clinicians must protect patient’s interests, and while ensuring that patient’s take ownership for a decision this does not mean they have to take responsibility for it. Having a caesarean section has implications not only for birth but also for decisions about future birth plans. Emmett, Montgomery and Murphy6 explored the use of a visual analogue scale to understand prospectively how women’s birth plans changed over time during pregnancy and in relation to the value individual women place on the outcome of their decisions. For the Chinese women making decisions about breast cancer, a decision aid in the form of a self-administered take-home booklet as an adjunct to the surgical consultation booklet form was seen as most appropriate in the study by Au et al.7 Those who read the booklet felt more able to understand the discussion with the surgeon, and those who did not read it had the highest pre-existing knowledge, but a significant proportion still did not find that it helped them to make a treatment decision. The importance of hope is a key element shaping expectations and influencing decision making. A group of researchers lead by Schrank details the development and validation with Austrian patients of a new scale measuring hope.8 The scale contains all established conceptual dimensions of hope, is significantly shorter and more concise than pre-existing tools and has valid psychometric properties. Edwards et al.9 document the involvement of parents in the design of a trial on the use of osteopathy for cerebral palsy. Fairness and equity were essential considerations for parents and influenced the design of the trial; a waitlisted design ensured that all children had the treatment, and the costs of the intervention were met by the trial. Edward’s article adds to the existing literature on service user involvement in identifying research priorities and being involved in research design particularly for research funding from charities and the public sector – a literature reviewed by Stewart et al.10 Their article found few examples where both patients and clinicians were involved in setting research priorities and even where such involvement existed and this did not necessarily limit what research was funded. Taken together, these articles illustrate not only the different ways that patients and the public get involved in determining their care but how services are developed and the nature of the evidence used to justify such changes.