Photo: Diabetes from Fotos GOVBA Flickr photostream

Last week the chairman of NICE, David Haslam called for patients to stop being deferential to doctors and be more proactive in ensuring that they receive the best healthcare available.  He argues that, patients should be more aware of the range of drugs available and be willing to assert their right to the best drugs available on the NHS

“It is essential for the future of the health service and for the future health of the nation that patients understand their conditions, their treatments and work with their health advisors so they can have the best care.”

More controversially he suggests that UK patients need to be more like their US counterparts in demanding choice in healthcare.  And yet as Judy Green observed in her blog post from 24th January: “Most Americans cannot afford the best health care their country can provide; and even those with good coverage are often tied to cost-conscious HMOs which offer little choice either”.  All healthcare systems face financial constraints and limits but, economics aside, is there anything wrong with patients engaging in equal partnerships with their healthcare professionals, and a rhetoric of personal responsibility?.

It seems reasonable for patients to be actively engaged in the healthcare process and to encourage them to do this.  There is a substantial body of research within the area of long-term or chronic conditions demonstrating the importance of the patient/clinician partnership and yet more research focusing on the changing nature of the doctor/patient relationship.  Our concern does not lie with the acknowledgement that patients should take an active role in their care, it lies in the concept of ‘personal responsibility’ and the implications of this for those less able to assert their rights.

The danger of this approach can be seen in the literature around empowerment in diabetes care.  Whilst there is no one universal definition of empowerment, there is a shared acceptance that it involves providing patients with the knowledge and tools with which to manage and take responsibility for their own care.  Advocates suggest that this approach encourages a patient-centred approach to care which iseffective and efficient. This releases healthcare professionals who are then able to care for those most needy.

While this may all seem obvious, the evidence is not so clear-cut.  There is some evidence that empowerment improves patient confidence in their diabetes knowledge but there is little evidence that empowerment results in better psychosocial or physiological outcomes.  Furthermore, recent research by Scambler, Newton and Asimakopoulou suggests that healthcare professionals retain control of the clinical interactions as the targets used to measure successful self-management are biomedical/biochemical.  This has the dual result of ensuring that healthcare professionals retain power but that blame for unsuccessful self-management lies with the patient.  Thus the power lies with the healthcare professionals and the responsibility falls on the patient.

Alongside this, research suggests that certain groups of patients are more likely to actively engage in their care than others.  Older patients, patients from ethnic minority groups and patients from lower social classes are less likely to become actively involved in their healthcare interactions.  The ‘individual responsibility’ agenda assumes that individuals make choices about the behaviours which they engage in, whether risk behaviours or health enhancing behaviours, and that these choices occur in a neutral environment.  In his work on health lifestyles, Bill Cockerham demonstrates the contextualised nature of individual behaviour challenging the trend towards the individualisation of health lifestyles research.  Cockerham’s ‘Health Lifestyles Model’ is one way of acknowledging and seeking to understand the impact of structural factors (social class, gender, ethnicity, age, education) on the individual practices that are usually the focus of lifestyles research (e.g. alcohol use, smoking, and diet).  Cockerham draws on research from the USA and Europe to demonstrate the limits of individual responsibility, showing, for example that socio-economic status effects the ability to engage in beneficial behaviours.  For example there may be barriers to engaging in sports activities, healthier diets, or health screening programmes either through the direct costs associated with behaviours, or indirectly through issues such as cultural capital or peer pressure.  Virtually every study that has been conducted confirms that those from higher socio-economic groups are the healthiest and most able to benefit from new resources, health information and education.

Originating in the field of diabetes care, the empowerment agenda has been adopted across medicine and dentistry in the UK and US and illustrates some of the challenges and dangers inherent in a rhetoric which emphasises individual responsibility.  This is further compounded by the social contexts in which individuals are required to take responsibility and the resources that they are able to draw on to develop an informed and equal relationship with the healthcare professionals with whom they come in to contact.

The danger then is three-fold: first, the call for individual responsibility underplays the importance of social context in the behavioural decisions that we make; second, those with least resources are least able to engage on an equal basis; and third, those most in need of being ‘empowered’ are most likely to be labelled as refusing to accept responsibility.   Thus, a call for us to engage in partnership and an equal relationship with the healthcare professions may well result in a culture of blame where conditions are not successfully managed.  And furthermore, those already most disadvantaged are least likely to be enabled to engage in an equal partnership and are thus more likely to be judged lacking and irresponsible.  With the rhetoric of individual responsibility comes the rhetoric of blame and shame.

About the co-authors: Koula Asimakopoulou is a Health Psychologist working at King’s College London.  She is interested in behaviour change and people’s attempts to follow through recommendations from health care professionals. She is particularly keen on exploring the concepts of patient empowerment and patient-centred care in chronic illness and dental settings, with a particular emphasis on how such concepts can be applied in practice in clinical settings.  Paul Newton is a Research Fellow, and Lead for the Long Term Conditions Research Cluster in the Centre for Positive Ageing, at the University of Greenwich. His research relates mainly to the management of chronic conditions and applying social theory approaches to the study of chronic and disabling conditions.