Session 1.2 – Legitimacy and Public Involvement in Priority Setting

Wednesday October 29 9:00-10:30

Achieving legitimacy in health care resource allocation: the role of public controversies

(Abstract 0066)

Tiago Moreira
Durham Univerity, United Kingdom

Background: In the past decade, a variety of countries have implemented different systems of priority setting in health care. Among these, the UK is usually held as a significant because of how it has attempted to combine high technical standards of health technology assessment with procedures of deliberative democracy in the National Institute of Health and Clinical Excellence. Social science analyses of the decision-making procedures of NICE have suggested that technical leadership has consistently trumped the deliberative processes that support it.

Objective: The paper focuses on the public controversy that surrounded NICE’s guidance on dementia drugs (2004-2007) as a vehicle to understand how 'extended' deliberative processes such as controversies contribute to the legitimacy of resource allocation decisions and systems.

Methods: A qualitative analysis of the publicly available documents relating to this controversy plus transcripts of the NICE Appeal and the Judicial Review.

Results: Analysis suggests that the process can be split into 3 phases: 1) the establishment of divergent ‘frames’ of evaluating treatments between NICE and clinical and patient stakeholders (2004-mid 2005); 2) attempts to build a ‘common world’ (mid 2005-Jan. 2006), and 3) where the technical reframing of the issue produces divergences between constituencies and a weakening of the public coalition (Jan 2006- Jan 2007)

Policy Implications: This case shows the importance of 'explicitly political' processes in achieving legitimacy for health care priority setting systems.

Challenges of Transparent Priority Setting for Healthcare Politicians

(Abstract 0079)

Ann-Charlotte Nedlund, Karin Bäckman, Per Carlsson
National Centre for Priority Setting in Health Care, Sweden

Background: Systematic priority setting has reached different stages of development around Sweden. One county council has established an active priority-setting procedure at the political level, which has created a lot of media attention and criticism.

Objective: Describe the progress of a priority-setting procedure (2003-2006) and different actors’ experiences. Based on the material identify challenges to consider when a procedure for priority-setting on the policy-making level is put into practice.

Methods: Semi-structured interviews (politicians, public officials and healthcare executives). Studies of archive data.

Results: Establishment of a procedure for priority setting has resulted in:
Achievements:

• Clearer function and responsibility for each actor; improved communication, new arenas for dialogues and better understanding of each other’s terminology, sharper formulated assignments and commitments.
• A broader professional involvement in decision-making.

Critical issues:

• Priority-setting concept has not diffused the organisation, limited knowledge of how resources are allocated.
• Consensus of importance of explicit priority-setting, however, uncertainty of application.

Policy Implications:

Learning objectives:

• Preparation; well-prepared procedure and clear instructions to limit non-compliance and ad-hoc solutions.
• Feasibility; assure adequate decisions for adequate actors/levels. Consider when a decision should be brought to the political level. Support is essential.
• Communication; consider the key-role of public officials as driving forces, mediators and translators.
• Continuity; establishment of a priority-setting procedure need long-term focus.
• Transparency; transparency within the organisation is as important as focus on citizens/patients.

Public Dialogue and Informed Opinion

(Abstract 0010)

Per Rosén
Region Skåne, Sweden

Since a pilot study on public participation was presented (Toronto), two long-term follow-ups on the actual dialogue groups have been conducted and a new major study has been introduced.

The overall objective of the study is to influence attitudes of the citizen participants. In the original study, the main objective was to study effects on participant’s attitudes on resource allocation (responsibility) and health care performance (satisfaction). This time, three more objectives will be studied, attitudes to politicians, level of well-being and self reported health status.

A combination of quantitative and qualitative methods is being used. A questionnaire is sent to 1 % of the residents 18-85 years old. The addressees are given the option to register for participation in a dialogue group. Postal information and invitations to meetings with experts and politicians are sent home to the participants. Interventions are conducted and the four dialogue groups are followed up two years later, both by interviews and by questionnaires.

The results so far have showed that even if a deeper understanding of the prioritisation problems has developed, few signs of increased sense of societal responsibility have been noticed. On the other hand, a very significant rise in satisfaction with the health care system can be noticed. The pilot study has shown the importance of analyzing what happens to people who participate in dialogue groups. A number of important research questions raise, like “Who is most representative?”, “Does information manipulate?” or “What roles should the politicians play?”.

Justice in the Eye of the Uninformed

(Abstract 0041)

Mari Broqvist, Peter Garpenby
The National Centre for Priority Setting in Health Care, Sweden

Background and Objectives: Our knowledge of how the general public experiences justice and fairness in relation to resource allocation in health care is still limited. A study was conducted among Swedish citizens with the aim of exploring different views on justice and fair procedures in priority setting.

Method: A sample of 125 people was first drawn from various work places and community organisations. In the next step a questionnaire about priority setting was used to achieve maximum variation sampling, resulting in interviews with 14 citizens, aged 18 - 78 years.

Results: The results of the interviews can be grouped into five categories: different definitions of justice given by the interviewees, views on the principles of distributive justice, reactions to having to stand back for others, comprehension of the principles for priority setting and finally views on legitimate decisions-makers and fair procedures. A growing recognition of politicians as appropriate decision-makers could be observed, once it became clear to the participants that resource allocation in health care includes tradeoffs between alternatives based not only on facts but also on values.

Policy Implications: This study reveals the importance of a deeper understanding of the public’s conception of justice and fairness in health care, in order to address problems of legitimacy. Making the public more aware of the complexity of decision making in health care is an important challenge.