There is a new orthodoxy: people who use health services can no longer be viewed as passive recipients of care but must be active co-producers of their own health.
But there remains a stubborn gap between the commitment and the reality: only a little over half of people are involved as much as they want to be in decisions about their care and treatment. Put 100 people living with a long-term condition in a room and only three of them will have a care plan and only two of those will report having helped put it together. Orthodoxy – ‘true belief’ – is a long way from orthopraxy – ‘true practice’.
Why does this gap persist?
Certainly constant change to the structure of the NHS diverts energy from relationship change. Equally, person-centred care is complex and novel. We don’t really know what it looks like and we lack the bedrock of experience and expertise in delivering it. In spite of political desire there is no silver-bullet, no blueprint and no off-the-shelf set of system tools.
Last month, the Health Foundation published Person-centred care: from ideas to action, which synthesises current knowledge on shared decision making and self-management support, and how to make these an integral feature of health care.
Alongside the full report, we published a shorter report that looks at the implications of the research for policy makers and those responsible for providing strategic direction.
Framework 15, Health Education England’s strategic framework, begins to draw attention to the importance of supporting health care professionals to have the skills and confidence to engage in more collaborative approaches to care. The Care Quality Commission (CQC), NICE, NHS England and Monitor are increasingly turning their attention to developing the NHS’s infrastructure, capacity and capability to support this new approach. At the Health Foundation, we're supporting the RCGP and RCP to build their person-centred capability.
But these are tentative first steps. These organisations are on their own journey to developing their knowledge and skills in these areas – and do so while being pulled by many other competing demands, facing their own financial constraints and where the pool of expertise to help them is limited. In order for them to design their policies, guidelines, inspections and incentives to support and enable person-centred care, their own workforce will need to be supported to develop their own knowledge, understanding, skills and confidence.
We have suggested some issues for these bodies to address, including:
Education, training and continuing professional development. What attention could be given to clinical trainers, supervisors and tutors, who role model behaviour in practice and, therefore, impact on both current practice and the training of the next generation? What role for team-based CPD in overcoming the shortcomings of training individuals in new behaviours and roles in isolation from their peers?
Investing appropriately in developing new roles and training new staff. Who will invest in developing peer workers, health coaches and care navigators to work within and alongside traditional services and how will their quality be assured?
Supporting citizens to develop their knowledge, skills and confidence. The NHS invests heavily in developing a workforce with clinical knowledge. Why should we expect patients to take on shared decision making and self-management without similar support to enable them to develop their capabilities?
Professional bodies. Is it time to more openly debate the professional implications of ‘doing good’ being about supporting people to achieve the decisions and goals that are right for them, even if that is not seen as clinically ‘optimal’?
Person-focused clinical guidelines. What would NICE guidelines look like if they started from person-centred, rather than from clinical, disease-specific, pathways? What role could it play in embedding brief decision aids for shared decision making in clinical guidelines? How can we bring in guidelines to support patients to manage their own health and to make decisions about their own health care?
Regulation. Can a health care provider really be deemed fit for purpose by the CQC if it is over-intervening in people’s lives?
Rewarding what really matters. Can Monitor and NHS England design a system that rewards providers when they deliver outcomes that are important to patients; that improves patients’ knowledge, skills and confidence; and that ensures patients’ preferences are taken into account?
Shared decision making and self-management support are still not embedded in routine health care. The innovators and leaders who have demonstrated their impact in this area and who are operating in a new paradigm remain a minority. If their work is to become widespread, we need to create a national context that minimises the barriers and aligns the levers to support a new type of health service. Without this, we will struggle to achieve a positive and lasting shift to person-centred care.
Adrian is an Assistant Director at the Health Foundation, www.twitter.com/AdrianSieff