Creating health in everyday life

All of us look after our own health, for better or for worse. When we brush our teeth in the morning, choose what to eat and drink, take exercise or slump in front of the television we are making decisions about our health.

In recent years there has been great interest in engaging people in their own healthcare, and particular in supported self-management for people with long-term conditions. This interest derives from a convergence of clinical, demographic, economic and technological incentives.

The clinical incentive for patient engagement is the growing understanding that active, participating patients have better health outcomes. There is also the obvious, though often ignored, fact that people with long-term conditions spend 8,700 hours per year looking after themselves, compared to less than six with their doctors.

The economic incentive for change derives to some extent from the demographic and technological ones. The argument has been set out most clearly in the reports of Sir Derek Wanless (1), in which he argued that the cost of healthcare could only be contained and outcomes improved by a 'fully engaged' population using health services more effectively and looking after themselves.

It is a paradox that huge improvements in life expectancy since the middle of the twentieth century have created an aging population with complex long-term conditions and health needs. Health technologies, whether these are new drugs or telemedicine, hold out the prospect of sustaining people's quality of life but at an enormous cost to healthcare systems. Engaged patients have to be good for health and good for healthcare systems.

UK factors

So how far have we got? Well, in the UK, not very far. Our National Health Service, with its benign intent, universal cover and paternalistic style, has found it hard to move into active engagement with patients and the public. A recent comparative study by the Picker Institute (2) highlights how ingrained this culture of passivity and paternalism is in the NHS. The study analyses two separate surveys of patients in six countries and compares their experiences in six areas of patient engagement.

he UK scores poorly compared to other countries in the areas of doctor/patient communication, access to medical records, involvement in treatment decisions, informed choice of provider and support for self-management. "British patients appear to receive less support from health professionals for engagement with their healthcare than those elsewhere," Angela Coulter writes. "The dramatic change in professional and patient roles that Wanless said was necessary to ensure the long-term sustainability of the NHS does not seem to have begun or at best is proceeding at a very slow pace." (Coulter 2006, p29)

Another study by Picker (3), funded by The Health Foundation, looked at the health attitudes and skills of people with long-term conditions. It found a real desire for engagement and self-management. Eighty one per cent of those surveyed were already engaged in some form of self-management and 88 per cent had made health related lifestyle improvements. "Overall, respondents demonstrated high levels of knowledge and confidence for self-management," the report says.

Encouraging though this is, it is clear that self-management skills are not evenly distributed. Confidence was lower amongst ethnic minority populations, older people and those from lower socio-economic groups.

Indeed, it is increasingly clear that health literacy is an essential prerequisite for a population engaged in health. Despite the enormous public capacity for health stories in the media, health education is primarily top down and knowledge based, rather than experience based.

Another way

Two examples of a different approach, which build on the capacity of individuals and communities to make changes in their lives, are the Expert Patient Programme and Communities of Health.

Communities of Health came about after Newham's NHS Trusts became concerned about diabetes in the local south Asian population. They launched a programme offering tests in public places such as markets and shopping centres. High levels of diabetes were found and the people tested were advised to see their GP as a matter of urgency.

However, there was no real increase in people seeking help. It seemed that people were powerless to act on the information they were given. Medically defined, professionally delivered public health information was not meaningful to them, so they could not use the knowledge to change their behaviour.

Faced with this barrier, the Newham Trusts adopted a different approach. They went to talk to the communities: faith groups, housing associations, day centres, schools and workplaces. They went where people were and found in those settings the motivation to improve health and the community leaders who could do it.

Communities of Health is the converse of the usual approach, in which traditional public health interventions are professionally provided, knowledge based and structured. Instead, it promotes varied, culturally specific and citizen led action. It has clinical involvement, but is not clinically led. Its strength and direction comes from the leaders of community groups and activities within them.

The Expert Patients Programme (EPP) is another model of patient led change, created in this case by people with long-term conditions for people with long-term conditions. The programme includes courses run by volunteer tutors who have long-term conditions themselves. This is central to its success. The tutors model behaviour that participants aspire to and demonstrate in their lives that health is achievable. They are the epitome of a 'do as I do, not as I say' approach.

Supported self-management programmes, such as the EPP focus on personal motivation, decision-making, goal setting, dealing with pain and fatigue and getting the best out of health professionals. They can produce measurable health improvements but primarily they increase self efficacy and thus well being and quality of life (4).

Health is created where people life, work, love and play. It is not created in hospitals or made by doctors and nurses. Health is in our hands and in our lives. The World Health Organisation has defined health literacy as the ability to make sound health decisions in the context of every day life. It is that ability which we need to foster if fully engaged patients are to become a reality.

References

(1) Wanless Derek, Securing or Future Health: Taking a Long-Term View, HM Treasury, 2002
(2) Coulter, Angela, Engaging Patients in their Healthcare; How is the UK doing relative to other countries?, Picker Institute Europe, Oxford, 2006
(3) Ellins, Jo and Coulter, Angela, How engaged are people in their healthcare?, The Health Foundation, 2005
(4) www.expertpatients.nhs.uk