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 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.
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.
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