Choice, participation and accountability: assessing the potential impact of legislation promoting patient and public involvement in health in the UK

Abstract

Recent legislation enabling increased patient and public involvement in health decision‐making will increasingly interact with the maturing independent patient movement to open up accountability systems across healthcare. Lay people will develop new roles, building on learning from the independent advocacy sector, self management, and wider active participation. Inevitably, this means a profound cultural challenge for healthcare organizations, and for citizens, as they begin to understand the implications of the new policies, including patient choice.

Introduction

Radical changes in legislation have arisen in response to, and alongside, the development in the UK of a forceful patients’ movement that has increasingly focused on public accountability and decision‐making processes of health‐care organizations, while maintaining traditional emphasis on needs and rights of individuals in respect of their health. There is a growing desire to question whether long established health‐care systems are ready and willing to break deep‐rooted dependency cultures and open up public and private dialogues about the inherent risks and uncertainties of health‐care transactions and interventions. Recent debates about ‘patient choice’ have added momentum to this trend, and a new paradigm appears to be emerging: one that synthesizes the values of consumerism and citizenship, and which challenges public authorities, professions, and the public themselves to rethink their relationships, roles and responsibilities in relation to health‐care delivery and service planning (see Table 1).

Table 1.

Modern structure of participation and the modernization agenda

Role and contribution	Purpose
Civic entrepreneurs: public servants who work as internal change agents and as valued partners with local people and their organizations, fostering an open participatory culture within the system	Challenging health inequalities, depends on effective co‐operation between civic and social entrepreneurs at a local level
Social entrepreneurs: local people who facilitate capacity‐building, active citizenship, and engagement in social‐democratic, and service innovation Expert patients: people with long‐term conditions (disabilities and chronic disease: mental and physical) who learn to manage their own health journeys and, in so doing, work in partnership with service teams and services’ management on services development and improvement Independent lay advocates: local citizens and independent practitioners who support marginalized and excluded people in participating in decisions that affect their lives	Continuous services improvement, characterized by accessible and responsive new services, across the whole system: appreciating the patient experience as the catalyst for change; ‘expert patient’ participation in systems for clinical governance; accessible lay advocacy; and transparent independent communications within local forums and scrutiny processes
Community engagement and governance: independent means of ensuring effective, inclusive local democratic participation in decision‐making, a necessary complement to corporate citizenship	Robust, transparent decision‐making, results from increasing community governance capacity, allied to open corporate governance and scrutiny processes and, where appropriate, deployment of inclusive, consensual methods of widening public participation

Advocacy, self‐determination and ‘democratic deficits’– the emergence of patients’ voices in UK health policy

For 25 years, I have acted as a facilitator and advisor within the richly diverse world of local communities, patient groups, service users and carers and their organizations. While it is impossible to keep up with the pace and complexity of innovation and development at a micro level, it is possible to discern a paradigm shift happening right now in this sector, representing a release of talent, energy and wisdom that cannot be ignored by policy makers, management cadre, or the professions. Nationally and locally the service‐user movement is leading to the search for equal partnership and for a real say in the reforms of local services. Partnership is now central for the successful development of health systems and organizations.

Within this widespread social movement there are four strands of thought and action now coalescing:

• •First, we are all fellow citizens with rights and responsibilities in relation to our own health and well‐being. We are all worthy of respect – not convenient labels: ‘handicapped’, ‘depressive’, ‘sufferer’, ‘victim’ and so on.
• •Secondly, we need to learn to facilitate dialogue ‘at every level in every process’ ¹ thereby shedding the labels and stereotypes we share about one another.
• •Thirdly, we need to learn to manage our own lives and health journeys in ever‐changing environments as a core competence to enable us to challenge the still dominant dependency culture: ‘doctor knows best’, ‘find the right medication’, ‘leave it to the social worker’. Working in partnership is a process of mutual discovery and informed consent and the exercise of choice.
• •Fourthly, we need to be aware that co‐operation within user and carer groups, and across traditional service boundaries, makes a positive difference. Flexible co‐operation of this kind is a real challenge to the ‘blame and shame’ culture that often pervades health‐care.

Sustainable patient and public participation heralds an organizational and institutional development challenge of considerable magnitude. It means the creation of health and social services system that are open, continuously adaptive, and more locally accountable. In the UK's segmented National Health Service (NHS), an internal culture of co‐operative development is as much a pre‐requisite of healthy user and public participation as is the maturing user movement. Even more fundamental will be the need to revisit the structural assumptions and working practices that currently define and divide public services and their hierarchical institutions. Furthermore, the recent call to shift the power of choice into the hands of patients suggests that we are about to see a transformation in the nature of corporate and clinical decision‐making in the UK's health services.

As citizens, working outside the system we can see the sources of resistance that will be faced by our potential partners in transforming the health system. The easy rhetoric around ‘Modernization’ is inevitably to be challenged from within. Machiavelli noted (I paraphrase) ‘the innovator has for enemies all those who are doing well, or wish to do well, under the current order’. Will the civil and public services really want to change? Are there helpful models available?

In the UK the recently legislated Health and Social Care Act and its associated statutory guidance ² have established a range of duties to involve patients and the public as well as formal structures to support them, including a Commission for Patient and Public Involvement in Health (CPPIH), accountable to Parliament. The impact of these new measures remains to be seen. The real issue is the actual response of local citizens themselves and their willingness and capacity to make the new system work.

The modernization of patient and public involvement in health

The reforms propose an independent system of ‘Community Governance’, led by CPPIH designed to balance the internal systems of corporate and clinical governance. Without such ‘Community Governance’ the NHS will play out the familiar ‘professions vs. management’ binary divide, at the expense of local citizens.

However, success will depend on how quickly we all, as fellow citizens, learn to adopt and engage with the new models of participation that have been developing in our communities during the past 30 years. A modern structuring of participation thus addresses the new purposes of a modern health service.

Now the possibility of ‘choice’ will confer new accountabilities on individuals and consumers concerned with safety, effectiveness, and quality, as citizens concerned with efficiency and equity of access. Most importantly, a challenging and problematic issue is raised: ‘who leads'? Challenging because of the need to establish legitimacy within the independent citizen participation domain; problematic because many of the resources (including influence and networks) remain tied up in traditional processes, structures and working practices that have evolved during years of democratic deficit.

Choice, risk and accountability: will citizens’ participation in health really work?

One sceptical view is that a third way for the NHS is a forced and unsustainable marriage between consumerist patient choice and traditional public service values of equity, and a free service at the point of delivery. Indeed, health policy academics will be quick to point out that where choice and equity come into tension it is usually quality and safety of care that suffer in a ‘zero sum’ public finance game.

This old debate will continue to flourish if it remains trapped within the parameters of the usual pre‐occupation with service provision, episodes of care, centrally determined information, information systems and the limited involvement of front‐line staff, patients and the public. Recently the UK legislation on Patient and Public Involvement in Health establishes the opportunity for a new consensus on choice and the process of choosing, which I call ‘co‐determination’. Such a new partnership will rest on three principles:

• •  Work with local people to develop an ‘outcomes‐orientated investment plan for health improvement’. We already know that unless and until the determinants of poor health are addressed, today's services will become unsustainable and that this is a shared responsibility for local citizens, local employers, and the whole range of public services. Means now exist to facilitate consensus about achieving well‐being at a local level, for example, the use of open space methods, citizens panels, neighbourhood forums. The principal block may be the unwillingness of stakeholders to work ‘outside the box’.
• •  Uninformed choice is no choice at all. There are two kinds of information that people will need in order to make this agenda work. First, individuals will require ownership of their own health record so that they can begin to take responsibility for the management of their own health and shared assessment of the options open to them. Secondly, we need a much less adversarial/partial analysis of service performance if people are to be able to make balanced choices between the quality and accessibility of services – rather than engage in a destructive competition to ‘get the best’.
• •  We have much more to learn from self‐management of chronic disease and independent advocacy. We now have over 20 years’ experience of supporting choices made by some of our most vulnerable fellow citizens, we also know that as people learn to become self‐managing, so they achieve better health outcomes by making better use of services, working partnership with clinical teams. This work remains on the margins of NHS culture, probably because it fundamentally challenges the paternalism of established decision‐making at every level.

Conclusion: a challenge for us all

Key health issues today relate to a growth in the population of people with complex disease together with a decline in people with the necessary skills to sustain our health and care services. We now know this is a problem that can be shared and publicly owned: provided we break with the bureaucratic systems and paternalism of the past. As fellow citizens we now have ourselves to play our part in helping health and health‐care services become sufficiently safe, reasonably accessible, individually responsive, and economically sustainable.

Powerful forces work against this opportunity: our own natural fear of death, disease, and disability; the inherent limitations of expertise and the entrenched vested interests of those who trade on our fear and enforced dependence on others’ expertise. The solutions lie in the emergent trends discussed in this piece.

Self‐management, advocacy, and ordinary wisdom together demonstrate that individuals can engage with the risks of sustaining health and healing at every level.