Engaging patients and public in decision‐making: approaches to achieving this in a complex environment

We are living in a dynamic, rapidly changing world with a more informed society, members of which hold greater expectations of health-care services and treatment outcomes. Consequently, the nature and delivery of health care is constantly changing, influenced by advances in medical science and technology, demography and greater public awareness of health and illness. These transformations have bearing on the dynamics of relationships that exist between patients and health-care professionals. A key change is the balance of power within relationships with a move away from the previous paternalistic approach, to one of partnership working and shared decision-making (SDM) based on currently available evidence. If care is to be person-centred, then patients must be at the centre of decision-making as outlined in the Department of Health Liberating the NHS – no decision about me without me. For this paradigm shift to be successful, education and support for both patients and professionals is essential. Patients require information and knowledge to meaningfully contribute to decision-making; professionals require the skills and confidence to give patients “permission” to have their say and accept that they too are experts when it comes to their health and illness. For both groups, there are a range of tools available to support the decision-making process, but these are not universally accepted. This issue of Health Expectations includes a range of papers exploring different aspects of patient participation in SDM, and the wider contribution of patient and public to a variety of care initiatives and service evaluations. In keeping with the philosophy of HEX, the papers offer an international perspective, utilize a variety of research methodologies and highlight some of the key challenges surrounding change for both patients and professionals. Patients require up-to-date evidence-based information to enable them to take informed care decisions. Prothero et al. report how a handbook for patients with moderate rheumatoid arthritis can support intensive management. The benefits of providing patients with information are acknowledged as increasing patient’s knowledge, satisfaction and adherence to treatment. In developing patient information material, it is essential that the material is codesigned with patients and/or carers to ensure it meets quality standards, is relevant and easy to understand in order to increase the likelihood of it being helpful and used. Previously co-design was a neglected area, with information being prepared, largely based on a biomedical model, by professionals and given to patients rather than enhancing patient autonomy. To embrace the essence of patient-centred care and SDM, the imparting and exchange of information and knowledge are essential. This can be challenging for professionals as demonstrated in the paper by Lazenby et al., in the context of end of life care and Engelen et al. with respect to exploring the views of men and general practitioners (GPs) on using decision aids for the early detection of prostate cancer. There are commonalities in the findings of these two studies concerning the sharing of