E-Patients: a ‘White Paper’ for empowering and engaging users and carers

Nick Goodwin

Policy-makers in the UK and other countries are increasingly recognising the importance of enabling patients, users and carers to become more involved in their own care. The influential Wanless Social Care Review, for example, found that only by encouraging a ‘fully-engaged’ model with users might the projected rise in future demands and costs of care for older people be best addressed. The recent NHS Next Stage Review by Lord Darzi also highlighted the importance of comprehensive well-being and prevention services in the future NHS, enabling people to manage their own health as well as treating illness.

Many initiatives in the UK have started to examine the importance of ‘self-care’ in the management of people’s own long-term care needs, such as the NHS Expert Patient Programme and the Whole System Demonstrators pilots. Future plans will seek to pilot individual health care budgets and promote individual care planning, potentially to all people with a long-term condition. So far, however, there has been little overarching discussion of how users and patients should be better integrated as co-producers in their own care.

Between 2000 and 2007, a group of American ‘e-patient scholars’ collaborated in the development of E-Patients: How they can help us heal healthcare. This self-styled ‘White Paper’ argues that when patients participate more actively in a more equal process of care, a new health care system is created with higher quality services, better outcomes, lower costs, fewer medical mistakes, and happier, healthier patients. The term ‘e-patient’ itself describes individuals who are equipped, enabled, empowered and engaged in their health and health care decisions, implpying a more equal partnership between patients and their health professionals.

The paper describes how a new generation of e-patients is slowly but surely transforming health care systems, and begins to establish how the e-patient might best be developed in a way that is both suitable and sustainable to policy-makers, clinicians, patients and users. The focus is primarily on how people can use new technologies (such as the internet) to gather information that will allow them to make informed decisions about their own care, and how such knowledge can best be used in partnership with health professionals. In particular, the discussion focuses on how the rise of the e-patient requires an end to 'professional paternalism' (the 'doctor knows best' attitude) and a move towards active, professional support in enabling patients to become experts in their own care.

The implication of this paper is that promotion and use of telehealth and telecare technologies is only likely to be advanced fully once the professionals who support such care accept the concept of the e-patient. However, most research evidence suggests that professionals are highly resistant to acknowledging their patients’ competence in managing their own health, often using their professional authority to discourage patient questions and to limit ‘informed choice’1. Unless excessive professional paternalism is addressed, then the true potential for the e-patient in using telecare, telehealth and otherwise managing their own care, is unlikely to fulfil its potential.

It could be argued that the next stage of health and social care reform should focus directly on creating conditions which allow the e-patient to flourish; a move that would imply developing measures of quality to incentivise professionals to move from simply treating illness to proactively managing health, supporting individuals to become experts in their own care.

Nick Goodwin is Senior Fellow at the King’s Fund and co-project lead for WSDAN

1. Coulter A (2002). The Autonomous Patient: Ending Paternalism in Medical Care. Nuffield Trust, London