INVOLVING CITIZENS AND PATIENTS IN HEALTH CARE SYSTEMS

The articles collected in this special issue form a broad international picture of different ways of involving citizens and patients in the health care debate. The range covered shows that there is not a single right way for involvement. The concept of involvement is multidimensional depending on the type of participants, area of interventions, and sociocultural settings; the common framework concerns citizens' rights and duties.

Essentially, involvement projects enroll (i) citizens, as users of health care services, and target awareness/prevention health campaigns (Thornton, 2010); (ii) patients, as people with a history of disease able to manage their illness and care; and (iii) volunteer associations consisting of organized groups of citizens and patients led by volunteers who typically themselves provide health care and services. Interventions include health care assistance, treatments, clinical studies, and health care policy decisions. Experience varies with different cultural, religious, and geographical conditions.

Two levels of involvement can be identified:

* Individual: Citizens, patients, or volunteers' associations are involved in projects where the results of their consultations or decisions are related to the individual sphere, such as defining or improving decision making, management of the disease, and informed consent processes. The experience described by Casati et al. takes this perspective and involved patients in a public research hospital, together with health care professionals, to review and promote improved informed consent practice. Casati et al. found that patients are vital for defining clear information material in response to true needs.

* Public: Citizens, patients, or voluntary associations can be involved in consultation or actual decision making related to the overarching issues, such as defining priorities in research, assigning (public) funds for research or health care services, evaluating health care services, and helping with organized release of health information. The article reporting CHAT, Choosing Health plans All Together, is an example of a small group decision exercise designed to give the public a voice in setting priorities in the face of unsustainable health care costs. This model has been used for research, policy, and teaching purposes.

Involvement According to the Type of Participants

As described in this issue, patients can be involved in several areas, ranging from definition of information material to be released to the public, decision making and management of the disease, to research prioritization. With the increasing number of patients with chronic diseases, the role of patients in the process of care has become more and more important. Patients with cancer, cardiac problems, diabetes, and neurological problems need access to extensive and complete information about the diagnosis, the efficacy and effectiveness of therapies, the prognosis, and lifestyle habits in order to make informed decisions, improve compliance with treatments, and reach the best qualitative and quantitative outcomes (Cavanaugh et al., 2009; Fallowfield & Jenkins, 1999; Roehr, 2010; U.S. Department of Health, 2000).

Involvement of patients is also spreading in a context usually reserved for clinicians and researchers, such as the prioritization of research. New projects have been developed in recent years in different countries. One of the first is the James Lind Alliance, presented here by Cowan, a nonprofit initiative that puts patients and clinicians together to identify and prioritize unanswered questions about the effects of treatments. This shift is particularly important considering that the priorities defined by clinicians, researchers, or the market often fail to meet patients' needs (Chalmers & Glasziou, 2009).

Gucciardi et al. explore factors and attitudes affecting willingness to participate in health research. Some points such as more positive attitudes toward health research, access to Internet, previous participation experience, and higher education contribute to greater willingness to participate in health studies. Understanding the factors that influence this participation could help identify direct efforts to improve trial recruitment.

In addition, as reported by Simi and Patoia, patients and consumers play a central role in improving the quality and safety of health care in a program called Patients for Patient Safety launched by the WHO.

Citizens are widely involved in health care, as targets of information awareness campaigns, such as cancer screening, or as users of health care services or technological innovations such as new diagnostic tests. Health literacy skills are required to maximize the desired benefit and reach a critical and independent point of view (Finset & Lie, 2010; Smith et al., 2009). These skills include knowledge of information including some understanding of statistical data (Evans & Thornton, 2009; Gigerenzer et al., 2008) and appreciating the clinical significance of this information for individuals and the community. Clear and reliable information about the efficacy and effectiveness of interventions is therefore necessary. Wale et al. highlight the importance of enhanced accessibility to evidence-based information such as Cochrane systematic reviews. The article describes the role of the Cochrane Consumer Network (CCNet), an international organization of volunteers who promote evidence-based health care through consumer and community participation, improving the dissemination of the Cochrane systematic reviews.

As users of health care services, citizens are involved in the evaluation and improvement of health care systems, as reported by Mack, who describes the community advisory committees (CACs) in Melbourne, and Danis et al, who present the "Choosing Health plans All Together" (CHAT) exercises. The Melbourne Health CAC started 8 years ago and has boosted organizations' ability to engage consumers, so that community participation is now incorporated into strategic plans, business plans, key performance indicators, and quality activities.

As described by Venuta and Graham, the Canadian Institutes of Health Research (CIHR) substantively involves citizens in its work. CIHR has set up a framework for citizens' engagement via committees covering 4 areas: identification of research gaps, relevance of research, translation of research into practice, and enhanced accountability and transparency.

For volunteers' associations, representing disease-specific associations or generic associations of consumers, the meaning of involvement becomes broader. Involvement is a dynamic participation in the debate about development, planning, and organization of health services, including social aspects, participating in the activities of regulatory agencies related to marketing new drugs or devices, or taking part in institutional technical-scientific-political boards or advisory committees (Andejeski et al., 2002; Caron-Flinterman et al., 2005; Collyar, 2005).

In the European Union, current practice and trend regarding patient involvement in health-related projects are increasing, but there is still no concerted strategy to achieve patient involvement, as underlined by Sanna. The European Patients Forum Value+ project presented has extensively analyzed the issue of patient involvement, identifying challenges and barriers to meaningful patient engagement.

The European Medicines Agency has also involved various stakeholders, including patients and other representatives of civilian society, in certain drug regulatory activities. As reported by Moulon and Dedes, the establishment of the Patients' and Consumers' Working Party marks a key step forward in formalizing this interaction.

Many countries are increasing public involvement in their health care policies. One interesting example is in the United Kingdom, where public involvement is now an established goal of science policy, as described by Petit-Zeeman et al. The Association of Medical Research Charities Natural Ground project specifies criteria for assessing the challenges and opportunities of patient involvement and, using best practice examples, presents different approaches that may be adopted.

European countries are not all progressing at the same pace. In Italy this process is in its infancy, though it is gaining ground. The Laboratory for Medical Research and Consumer Involvement, as described by Mosconi and Colombo, is part of the Mario Negri Institute, a nonprofit institute for pharmacological research. The aim of the project, as summarized in this article, is to foster an alliance between patients' associations and health care professionals through training projects developed together with clinicians and patient groups.

From a public health viewpoint there are still significant obstacles to efficient and effective patients' involvement. There is a cultural challenge related to patients' role. Frequently, the citizen/patient is part of a paternalistic model. Health care professionals often fail to appreciate the benefit achieved by citizen/patient involvement. The health market presents its own set of challenges. In general, improved quality of health is equated to increased utilization of drugs and technology. Scant importance is attributed to the efficacy and effectiveness of treatments, or the outcomes measured (hard or soft). Rarely are these questions discussed with citizens.

A future challenge in this field is to produce more evidence of the impact of citizens' or consumers' involvement. A systematic review by Nilsen et al. (2006) showed that few trials are carried out in this field; thus, the effect of involving consumers in health care policy and research remains largely unassessed.

In the final analysis, involvement is a multistep process in which the fundamental principles of participation must be fully shared and the importance of individual and collective experience recognized. Experience of involvement ensures that health policies really reflect the needs of consumers, patients, and care givers. There are increasing numbers of reports that involving consumers or patients in the health care debate leads to greater patient responsibility (Mayer, 2003). While recognizing all the limitations and difficulties that still exist, therefore, the level of involvement of citizens and patients as partners in all health policy decisions still needs to be raised.

Paola Mosconi

Cinzia Colombo

Laboratory for Medical Research and Consumer Involvement, Istituto di Ricerche Farmacologiche Mario Negri, Milan, Italy

REFERENCES