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This chapter discusses patient and public involvement in the planning and delivery of healthcare services. Benefits for both patients and clinicians include different perspectives on the same issue, diversity of input resulting in better decision-making, patient empowerment leading to better health and well-being, improved services through a patient-led NHS, and better outcomes and greater job satisfaction through positive feedback.

This chapter focuses on NHS policy on involving patients in the design and delivery of healthcare. The Expert Patient programme was developed to empower patients with chronic disease and enhance their control of their own health. Knowledgeable patients have improved life control and activity, often suffer fewer symptoms, and are more resourceful.

Shared decision making (SDM), health literacy, and patient empowerment are related, partially overlapping constructs, all associated with patient-centred care. SDM focuses on the communication and deliberation process between provider and patient during a health care encounter that aims to support effective decision making about treatment or health behaviour. Health literacy includes functional, critical, and interactional aspects, including the social skills needed to communicate effectively with health providers, and may be a prerequisite for SDM. Patient empowerment has been described as both a process of becoming empowered, and as a state of being empowered, and may be a valued health care outcome for people with long-term conditions. Patient empowerment can be achieved through patient-centred care, including SDM. However, patients can also empower themselves through participation in patient groups, and by improving their health literacy through self education. Relationships between the constructs may therefore be reciprocal.

This chapter presents an empirical case study on informed consent procedures for medical research on leftovers from surgery in Austria. It suggests a way to understand informed consent as a ‘boundary object’ between medical professionals and patient-donors. As such, informed consent might be better understood as an appropriate tool to satisfy divergent interests in the medical encounter than as a tool for patients' empowerment. It is argued that different motives for both obtaining and giving consent account for the contemporary unchallenged practice of informed consent. This can be seen as a contribution to the ongoing interdisciplinary analysis regarding the question of how to deal with informed consent in the area of tissue research and banking in the European Union and its associated countries.

We refer to ‘encounter tools’ to draw a distinction from tools that have been primarily designed to give patients information prior to their visits to clinicians, (patient decision aids; PDAs) and which we consider to be pre-encounter tools. Although there is consistent evidence that pre-encounter PDAs increase patient knowledge, data showing that they lead to changes in communications is less robust and often based on response to a single survey item. There is no body of evidence from observational research that pre-encounter tools lead to shared decision making (SDM). Published evidence shows that tools designed to promote collaboration and deliberation facilitate SDM. Such tools must be based on high-quality synthesis of research evidence and be brief enough to use in conversations between patients and clinicians. Gathering more data about how to motivate clinicians to use these tools and get them embedded into clinical practice is the next task.