- Nick Black, professor of health services research1,
- Crispin Jenkinson, professor of health services research2
- 1Department of Public Health and Policy, London School of Hygiene and Tropical Medicine, London WC1E 7HT
- 2Department of Public Health, University of Oxford, Oxford OX3 7LF
- Correspondence to: N Black nick.black{at}lshtm.ac.uk
There is now a widespread realisation that patients’ views are not optional but essential to achieving high quality care.1 The contribution of patients to NHS funded research in England is enshrined in the national advisory group INVOLVE,2 and the 2008-9 NHS operating framework took the first step in making patient reported outcomes a mandatory requirement for audit.3 In addition, national surveys of patients’ experiences of health care have become a feature of NHS regulation over the past few years.4
Patients offer a complementary perspective to that of clinicians, providing unique information and insights into both the humanity of care (such as dignity and respect, privacy, meeting information needs, waiting and delays, and cleanliness of facilities) and the effectiveness of health care. Given that, apart from when they face life threatening events, patients are generally seeking alleviation of symptoms, reduced disability, and improved quality of life, it makes sense to involve patients as they, rather than clinicians, are the ones who can report on these aspects of their health.
Greater recognition and acceptance of the contribution of patients over the past two decades has been accompanied and facilitated by a major growth in the development of rigorous instruments (questionnaires) and a burgeoning research literature on their uses and benefits. This article outlines some of the recent developments and initiatives in England before considering some of the methodological, practical, and political challenges.
Patients’ experiences of humanity of care
Over the past decade, concern has shifted from measuring patients’ satisfaction with the humanity of care to measuring their experience of the humanity of care (that is, seeking value free …
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