Citizens or patients – what is the difference ?

Citizens or patients – what is the difference ?

Are the interests of citizens and patients identical? The European Public Health Alliance explores the different approaches and priorities of both constituent groups and sets out key guidelines and good practice for developing effectice representation of patients views.

FORUM:

Access to Health

The issue of active patients participating in decisions about their own care as well as health policy and provision has been highlighted in many discussion papers and recent court cases. It is therefore worth examining the relationship between citizens and patients and how their divergent interests can be addressed.

Patients are users of the health care system. Citizens are the population as a whole (sometimes referred to as ‘the public’ or ‘the broader community’).

All patients have a common interest in the ready availability of quality health care services and of appropriate information and support services to assist them to return to good health or to live well with their condition. Some patients have an interest in broad public health measures and the social determinants of health, but others do not. Patients are a diverse group, and on any given issue, there are likely to be a number of patient perspectives.

There are many ways to describe citizens’ interest in the health system. One useful approach is stewardship: citizens are trustees of the national health. That trust is an intergenerational responsibility to use the available resources of the government and the community to improve the health of the community as a whole. The resources available to national governments include regulation and provision of health care services, as well as public health measures and social determinants of health. The scope of the European Community is more limited as there is currently no competence in relation to health care services. However there are a range of decisions made across the European Community competencies which impact on the health of the population as a whole. Whose role in health decision-making Citizen and patient participation is about gaining broad public ownership of the decisions which are made. This is particularly important in the health sector as some issues are controversial, such as those relating to rationing of health services, location of hospitals, regional allocations of funds, and access to and payment for pharmaceuticals.

Organised citizen and patient advocacy is important to ensure that the needs of patients and of the community as a whole are effectively balanced against the interests of business and the health professions. Health managers also need to hear citizen and patient views.

Different priorities

Citizens have an interest in decisions about health systems, public health and other issues which affect the health of the population as a whole.

Patients have an interest in decisions about health care systems and may have a broader interest in health matters. For example, some conditions are affected by issues which commonly fall into the scope of public health, such as food choices (e.g. Coeliac Disease) and air quality (e.g. asthma). There are also some patients’ organisations which have chosen to focus on broad strategies of prevention.

Thus, it is appropriate, and essential, for European Community policy makers to provide both the major citizens’ organisations and patients’ organisations with opportunities to input into policy.

Patients’ organisations

The criteria for evaluating a patients’ organisation are contentious. However, there are growing needs to clearly identify patients’ organisations and to distinguish them from other health stakeholders.

The primary issue is the extent to which the organisation reflects the views of patients and their carers, rather than the views of health professionals (including researchers) or the pharmaceutical industry.

Key factors to be considered when determining whether an organisation can legitimately claim to represent patient interests include:

• Do they have a membership consistent with the organisation’s title and the constituency it claims to represent?
• Do they have processes to involve their membership in developing the organisation’s policy positions?
• Are they transparent about their structure and internal processes?
• Are they transparent about sources of funding and relationships to industry and other stakeholders?

Some patients’ organisations refuse to accept funding from pharmaceutical companies on the grounds of conflict of interest. Commercial funding is often not just limited to direct sponsorship, for example a formally constituted not-for-profit agency may act as a conduit between the pharmaceutical company and patients’ organisations.

Many patients’ organisations do accept pharmaceutical industry funding. Approaches to minimising conflict of interest in these circumstances may include:

• establishing limits on industry sponsorship as a proportion of total income; and
• clearly articulating the role of the sponsoring body in relation to sponsored projects and the organisation generally in policy documents.

EPHA recommends that clear and transparent guidelines should be agreed with interested patient groups to respond to the issues raised in commercial sponsorship.

Participation by under-represented groups

As with many membership organisations, patients’ organisations commonly have very low rates of participation from people with lower socio-economic status, from indigenous communities and other ethnic minorities, and from other marginalised groups. While this does not undermine the role of patients’ organisations, it does mean that additional strategies are required to ensure effective representation of the interests of disadvantaged groups.

As heavy users of the health care system, the majority of patients’ organisations relate to chronic conditions. Patients with acute conditions do not commonly organise as patients’ groups and alternative processes to identify their needs and advocate their interests are required.

Conclusions

Both patients and citizens are two distinct interests and both have a role to play in health decision making. While calling for transparency in European Community decision making, NGOs have a responsibility to be transparent about their own structures and activities. Patients’ organisations and citizen’s organisations need to provide clear information about their membership, processes for involving members in policy development, structure and internal processes, and sources of funding and relationships with industry and other stakeholders, amongst other issues.

It would be useful for the European Commission to develop a public list of patient groups operating at a European level which contains information on their membership, internal decision-making processes for consultation and representation and sources of funding.

The

<em>European Public Health Alliance(EPHA) represents over 80 NGOs working in support of health in Europe. It aims to promote and protect the health interests of all people living in Europe and to strengthen the dialogue between the EU institutions, citizens and NGOs.