Self‐management in long‐term conditions – where does the health service sit

Welcome to this edition of HEX. We still have quite much catching up to do, and a large number of the manuscripts published in this edition were submitted and accepted two years ago. I intend to focus this briefing on long-term conditions (LTCs), highlighting the manuscripts in this edition which link to this theme, and with a particular focus on self-management and the role of the health service in supporting patients with LTCs. As Lhussier et al. state in their review, people spend just a few hours each year in contact with health-care services and are ‘self-managing’ their conditions 99% of the time. Foster and colleagues, in their qualitative study, suggest that ‘patients are likely to engage with a structured team care approach to CDM (chronic disease management) if there is a sense of personal obligation and sufficient financial incentive. The level of engagement in team care is likely to be optimized if patient expectations and preferences are considered in decisions'. The lessons from this study are particularly applicable to those health service systems which involve payment for service, but the view that the patient perspective on how services are configured and delivered, and will influence patient engagement, is surely relevant in all health systems. Kaplan and Baron-Epel describe a telephone survey used to illuminate public priorities in health care in Israel. Interestingly, check-ups for early disease detection and care for frail elderly people, perhaps different ends of a spectrum, were chosen as lead priorities. Care of, and support for, patients with long-term conditions was not given as a choice in the survey. Lhussier and colleagues present concept maps for ‘patient-centredness’, shared decision making and self-management, and then synthesize to present a model for care planning. They recognize the numerous definitions of ‘patient-centredness’, and cite Mead and Bower's1 description of a broader, biopsychosocial perspective of illness, taking account of the ‘patient as a person’ and understanding their unique experience of illness. I would also draw reader's attention to Stewart's2 proposal that a useful way of understanding the concept of patient-centredness may be to consider what it is not: not technology-centred, not doctor-centred, not hospital-centred or disease-centred. Protheroe et al.3 emphasize the importance of patient participation in health care to enable patients to share decisions about treatment and management, which are commensurate with improved health outcomes. They suggest that whilst lower health literacy, and therefore lack of health knowledge, can cause the widely reported differences in participation, this is not the whole story. They observe that lower health literacy is compounded by the differences in role expectations between groups of different socio-economic status and the experiences of prior use and expectations formulated in sociocultural context. Policies aimed at simply providing information, even information directed specifically at generating improved health literacy, will not be successful if patients are not in a position to, or willing to, engage with information. Interventions for self-management support are also critical to improving quality of care for patients with long-term conditions. Kennedy et al. 4 describe how a whole-system intervention to enhance self-management support in routine primary care did not add noticeable value to existing care for patients with long-term conditions. They suggest that the active components required for effective self-management support need to be better understood, both within primary care and in patients' everyday lives, recognizing the limited time that patients spend in contact with health services. This leads us back to Lhuser's observation that patients spend so little time in contact with health services, and thus, the importance of family, friends and ‘social networks’ in supporting people manage their long-term conditions needs to be recognized. Vassilev et al.5 discuss how social networks play an important part in the supporting people manage long-term conditions, but that, in the literature, social networks tend to be defined narrowly and are primarily used as a way of acknowledging the significance of context. Vassilev's team suggests that there is insufficient discussion of the specific types of networks that can support, or indeed undermine, self-management as well as an understanding of the processes involved. This will necessitate shifting the emphasis of self-management towards community and network-centred approaches, which may also prove more appropriate for engaging people in socially and economically deprived contexts

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• Towards a global definition of patient centred care

  Open Access•Moira Stewart•BMJ•2001

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• Patient-centredness

  Open Access•Nicola Mead, Peter Bower•Social Science & Medicine•2000

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• Permission to participate?' A qualitative study of participation in patients from differing socio-economic backgrounds

  Open Access•Joanne Protheroe, Helen Brooks et al.•Journal of Health Psychology•2013

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