Belgian citizens take the view that we should establish priorities in health care which are very different from those currently used by experts. First of all, quality of life is more important than extending life. Citizens are also demanding a health policy rather than a sickness policy. They want to shift the emphasis firmly towards prevention and health education.

These are two of the striking conclusions from the CitizenLab 'Reimbursements in health care' organized by the Brussels-based King Baudouin Foundation.

In the CitizenLab you can see signs of a new kind of citizenship. Citizens showing their power and being willing to contribute their knowledge as they engage in debate. This is direct democracy. – Josse Van Steenberge, Professor Social Security

Citizens on health care

Until recently there had been little experience of citizen participation in the area of reimbursements for health care services in Belgium. Nevertheless, it is an important issue, since the quality, accessibility and solidarity of our health care system are largely determined by it.

Dutch political scientist Robert Hoppe calls reimbursements in health care an 'unstructured' policy question. This is because science does not offer a ready-made answer to the question of how to guarantee excellent, accessible and sustainable health care for all. There is also no ethical consensus on which interventions should or should not be reimbursed.

Unstructured problems require a deliberative, learning approach. The King Baudouin Foundation has therefore chosen methods with a research-based, learning character in which various stakeholders - including citizens and patients - enter into consultation with each other in a step-by-step process.

A policy framework

Decisions on the reimbursement of health care are made within a specific policy framework.

During a European expert workshop in 2012, a policy framework was outlined, with three important components:

• Values and aims represent the fundamental building blocks of health care policy. The values come from society, the aims are the translation of these values into policies to make them more concrete.
• Processes and structures describe how we wish to achieve those aims. In doing this, 'accountability for reasonableness' has to be the guiding paradigm.
• Criteria are a way of interpreting that paradigm in the form of concrete measures.

The CitizenLab

The CitizenLab is an innovative method of gaining insight into citizens' opinions. It is based on consultation and deliberation, rather than on a survey.

The CitizenLab was monitored by a support committee and by scientists from four academic research groups, who carried out a discourse analysis.

AIn the CitizenLab, thirty-two citizens, working over three weekends, engaged in discussions and entered into dialogue with experts, stakeholders and policymakers.

They did this on the basis of concrete cases involving reimbursements which served as an input for the debates. Nevertheless, it was not the purpose of the CitizenLab to offer recommendations on reimbursement for specific treatments, but instead to draw up general criteria for reimbursement in health care.

No attempt was made to reach a consensus, but the aim was to generate diverse, well-supported opinions.

The 32 participating citizens were given the freedom to construct their arguments on a broad footing and to make connections. The debate therefore regularly moved outside the context of reimbursement, for example addressing health care and health policy, the foundations of the Belgian social security system etc.

Values

Citizens are calling for a public health insurance system which is based on solidarity and justice.

The participants link individual responsibility for one's own health with social responsibility in order to preserve solidarity and justice. That is because every individual choice to lead a healthy or unhealthy lifestyle has an impact on everyone.

Aims

Citizens attribute more importance to improving quality of life when a person is sick than to extending life.

A similar result also emerged from the survey from the Belgian Health Care Knowledge Centre (KCE).

For citizens, quality of life means more than 'not being ill'. In addition to physical comfort, quality of life is also about psychosocial aspects, autonomy, interaction with the environment and dignity.

The participants expect to have a health care system that meets the overall care needs of both patients and those close to them. Conditions that are complex or life-threatening or which have a major, long-term impact on quality of life, require multidisciplinary and integrated care.

At present, decisions are always made on individual aspects of patient care. There may be a medication, a physiotherapy treatment or various other things, but the decisions on all of them are made by separate committees. Nobody looks at the whole situation. – A participant in the CitizenLab

Citizens are insisting on a shift in focus from a sickness policy to a real health policy. They want to put the emphasis on prevention, health education and health promotion in every area of policy.

The agenda for change

In order to achieve these aims, changes will have to be made. The roles and tasks of the stakeholders, the processes involved in decision-making and the criteria on the basis of which decisions are made, need to be adapted.

Citizens consider that the health insurance system should continue to be a publicly subsidised system as it is at present. The government should continue to coordinate it as a whole and safeguard the public interest.

The range of stakeholders able to submit an application for reimbursement is being extended so that patients and the organizations representing them can also submit applications, as well as pharmaceutical companies and health care providers.

The citizen-patient is involved in the decision-making process, improving its transparency and its democratic character.

The budget will be kept under control through 'smart' purchasing, price negotiations at the European level and greater efforts in the area of prevention.

Decisions that are made can be reviewed flexibly if new evidence emerges or if needs change. Decisions must be made in a much more global, multidisciplinary context (reducing the barriers between government departments).

The citizens put forward nineteen criteria and six conditions for reimbursement. How these criteria emerged and the relative importance assigned to the criteria and conditions was fully explained in a report validated by the citizens.

The citizens added 11 new criteria to the list which is currently used by policymakers when making decisions on reimbursement. The most notable of these are 'quality of life of the patient's environment', 'preventative effect', 'psychosocial well-being', 'effectiveness in combination with other treatments (integrated care)', 'good investment' and 'rarity of the disease'. The citizens grouped the criteria into three areas: the patient's perspective, medical-technical elements and solidarity in society. These conditions tend to determine the circumstances under which a treatment is reimbursed for an individual patient.

A learning system

How can we convert all these initiatives for change into an excellent, accessible, sustainable health insurance system? A learning model, the result of an expert - stakeholder workshop in 2015, sets out an initial architecture for a possible solution.

The system makes maximum use of the available resources for health care (input) in order to promote quality of life and health (output). The model comprises a learning, iterative component with modules that are harmonized with each other (fuchsia). These modules are supplied with data flows (dark grey arrows) and participation flows (light grey arrows).

If the proposed model is truly powerful, then at some point a situation of equilibrium will be reached. This is not to say that there will be no further changes or evolution, but the system will adapt flexibly to changes in the context.

What impact will this 'steady state' then have on health care in general, and on health insurance in particular? One of possible consequences is then a far-reaching decentralisation of decision-making. In addition to a decision about the specific treatment, the linked decision on reimbursement can also be made much closer to the individual patient. This can be done, for example, through multidisciplinary consultation between health care providers.

Finally build a health care system that actually starts from the patient. That is what citizens are telling us. – Ri De Ridder, RIZIV/INAMI

Nevertheless, even in this scenario the government must still assume the role of conductor of the orchestra to ensure that all the violins stay in tune with each other, monitor the distribution of the budget, guarantee that treatments are 'evidence-based', and so on. The government will continue to be the most important coordinator of the health care system and protector of the public interest in future.

Concluding forum February 18, 2016

During a public forum on 18 February, the King Baudouin Foundation presented an agenda for change in healthcare which synthesizes contributions from citizens, experts and policymakers. Quality of life should take precedence over extending the length of life, monodisciplinary reimbursement committees should be replaced by multidisciplinary commissions, patients should be much more involved in decision-making and the health insurance system should be converted into a form of health insurance that emphasizes prevention and staying healthy.

With comments from ministers Maggie De Block and Jo Vandeurzen, Cabinet Secretary of the Walloon Minister of Health and Social Action Maxime Prévot, Alda Greoli, and RIZIV-INAMI General Administrator Jo De Cock comment. read more

Notes

Aide pour les graphiques

Graphique 1

Decisions on reimbursements are seen as not very transparent, which is leading to a loss of trust in the system among citizens.

It must be made easier to review decisions on reimbursements made in the past, in the light of new information and experience.

The composition of reimbursement committees should ideally be changed from monodisciplinary committees to multidisciplinary committees in which patients also receive a hearing.

Quality of life must be placed at the centre of decisions on reimbursement.

Prevention must be made a full criterion.

In the context of prevention, greater efforts must be made to have a sustainable long-term vision.

Health care must respond more effectively to patients' real needs and desires.

(Cost) effectiveness is still important, but with a greater emphasis on integrated care and quality of life.

The range of stakeholders able to submit an application for reimbursement must be extended to include patients, their associations and other stakeholders. At present only stakeholders on the supply side (industry, certain groups of care providers) are able to submit applications.

The government must ensure that policy always takes the needs of patients as a starting point and that health care is not be made more 'market-oriented'.

The expertise of the care provider remains important in individual diagnosis and treatment. It is necessary, however, to ensure that decisions are made in consultation with the patient and 'demedicalized' if possible.

The patient can act as an expert due to his experience and contribute parameters for use in making decisions on quality and needs.

How can citizens and patients be included in decision-making in a more systematic way and how can they be better informed?

Graphique 2

What is the impact of the condition in terms of prevalence (number of people with the condition) and costs to society? To what extent does the disease give rise to major additional costs?

How certain are we of the evidence of efficacy/cost-effectiveness on which the reimbursement is based?

The extent to which effective treatments are available for the condition.

The extent to which the treatment causes side-effects

The extent to which the treatment offers health gains in relation to the cost. Do the costs justify the benefits?

The extent to which the combination of treatments is (more) effective in meeting the patient's health care needs.

What is the impact of the condition on the patient's life expectancy, quality of life and well-being? How necessary is the treatment?

The extent to which the patient's condition is improved in terms of life expectancy and quality of life.

The extent to which treatments result in 'aesthetic' effects allowing a person to come closer to a personal or societal norm. According to most participants, reimbursement of aesthetic treatments is only possible if there is a medical need (e.g. breast reconstructions in cancer, in cases of medical or psychosocial suffering etc.).

The extent to which a person 'feels comfortable with themselves' and the impact of that on how that person functions in society.

Impact of the treatment on the patient's life expectancy. Extending life can never be seen in isolation from quality of life (adding healthy years of life must be at the heart of health care).

The effect of the treatment on the patient's quality of life, measured on the basis of an objective (based on measurement scales) and a subjective (by the patient himself/herself) assessment of their life.

The effect of the treatment on the quality of life of people close to the patient (e.g. partner, main carer, family members etc.)

The extent to which the cost of the treatment is affordable for the patient.

Extent to which the treatment addresses or avoids long-term health problems.

Extent to which the treatment has an effect in preventing future short-term and long-term health problems.

Conditions that are not very common (<1 in 2000) and are recognized as rare.

Impact of the treatment on reducing or increasing social inequality.

To what extent is the decision in harmony with the foundations and objectives of social security and the health insurance system?

A reimbursed treatment must be prescribed in a justifiable way by a doctor with sufficient knowledge and experience of the condition and the patient.

The treatment must be provided and/or the diagnosis made by a team of different specialists who have sufficient experience and knowledge of the condition and the patient.

The treatment must be reimbursed for the age group in which it is effective and cost-effective. Age cannot, however, be a reason to deny people (e.g. older people) access to certain treatments.

In some cases the place of treatment (e.g. expert centre in a hospital, home care etc.) may be an important condition for reimbursement.

Extent to which the patient has received the recommended and available care (investigations, treatments, conditions) before being entitled to a subsequent reimbursed treatment.

Number of patients in the same family who are facing the same medical problem.

Graphique 3

The foundation on which the activities model stands is a vision of a public health care system at the level of Belgium. This vision provides direction for policymakers and for the health care and health insurance systems. The vision is also translated into short-term and long-term aims for the health care system.

It is desirable to have a debate in society on the amount of resources that we as a society are willing to allocate to health care.

The Belgian vision must also be harmonized in the international context and with the international agreements to which Belgium has given a commitment (EU, UN, WHO etc.)

An important factor for the success of any change process is creating a support base. If there is no support base, any changes made to the current health insurance system will be difficult to implement.
At present, stakeholders on the supply side (health care providers and industries) and mutual health insurers play a prominent part in the decision-making process. They must be persuaded of the need for the agenda for change and the added value that it offers.
New stakeholders on the demand side (patients and citizens) must not only be given a role in the new model, but they must also be able and willing to take on that role.

A central feature of the learning system is the development and maintenance of an assessment and decision-making model. This is precisely where the changing contextual elements - needs, developments in society, technological and other innovations in health care etc. are taken into account in the process of keeping the system under continuous review.
The outcome of the model is a combined evaluation of quantitative or 'evidence-based' parameters, and qualitative elements (i.e. patients' subjective experiences).

After the assessment phase comes the decision (6) on allocating specific funds to an intervention (allocation). An application for reimbursement must be viewed in the light of integrated care. It is therefore proposed to replace monodisciplinary reimbursement committees with multidisciplinary decision-making committees.
Other stakeholders - patients, patient associations, care providers etc. - will have opportunities to submit requests for reimbursement at this level.

More knowledge must be developed on the concept of quality of life and its relationship with health so that it can be operationalized as a criterion and a measurable output parameter from the learning system.
The operationalization of quality of life requires a suitable definition and a sophisticated set of measurement tools.

In order to complete the circle, the needs in the areas of health care and preventative health care are identified and weighted.

Ensuring that a large flow of health data is recorded and analysed appropriately is one of the most important components of the system. Without concrete front-line data, the model will lack inputs and will not be able to keep a finger on the pulse of evolving needs among patients and in society.

One important area that involves all stakeholders and is necessary in order to build the support base and maintain its robustness is communication, accountability and transparency towards all those involved.

In order to give all those involved a legal place in this system - including newly included stakeholders such as patients and citizens - new consultation processes and consultation structures are being set up. In this process it will be necessary to experiment with new forms of participation.

The development of the knowledge, expertise and competencies of all those involved is both an output from the learning model and an input for the model.