Cancer survivors and people living with chronic conditions might theoretically have an increased risk of premature death or disability, which his why insurance companies are sometimes reluctant to grant them outstanding balance insurance on the same terms as healthy citizens. In Belgium, however, a “Right to be forgotten” – i.e. a right not to have this medical history impact their outstanding balance insurance contract – has been established by the law of April 4th, 2019 for those who have been officially declared cured of certain types of cancer or who live with certain chronic conditions.
The law of 30 October 2022 has extended this right to be forgotten to allow people who have been declared cured of cancer for at least 8 years (5 years for young patients diagnosed before the age of 21) to take out outstanding balance or guaranteed income insurance. In this context, the cancer cannot be a cause for higher premiums or for a downright refusal from the insurer. From January 1st, 2025, this timeframe will be reduced to 5 years for all people cured of cancer.
Specific rules may be set for certain types of cancer and chronic conditions regarding waiting periods, additional premiums and/or refusal of insurance. This is specified in two lists (called “reference grids”) published in the form of Royal Decrees (Royal Decree of 26 May 2019 and Royal Decree of 7 June 2023). The KCE has been entrusted with re-evaluating these lists every two years, taking into account medical progress and scientific data. It can then propose changes to the list to the Price Monitoring Office for outstanding balance insurance policies.
Invasive breast cancer and type 1 diabetes have already been included in the KCE’s work programme as part of the “right to be forgotten” programme. To continue this work, the KCE regularly issues calls for proposals to identify other health problems which could potentially be included in the reference grids after having been carefully studied. Any person or organisation with an interest in cancer or a chronic disease (citizen, healthcare provider, patient or consumer association, organisation, political decision-maker, etc.) may submit a proposal.
The call for study topics covers both new diseases to be investigated and requests to revise the criteria or conditions for diseases already included in the reference grids.
Proposals can be submitted using the online form available on the KCE website (in Dutch or in French). It can be completed in French, Dutch or German, and must then be returned to KCE (kce_project@kce.fgov.be) by the deadline specified in the call for proposals.
All submitted proposals will be evaluated by a panel of judges within the KCE based on predefined criteria, in order to select the most relevant topics. These eligibility and selection criteria are set out below.
For each selected proposal, the KCE will then assess whether the health problem can be included in the reference grids, and under what conditions (stage of illness, age criteria, etc.).
Pre-selection: check of eligibility criteria
To be considered, the proposal for a study subject must first meet the following conditions:
- The form was received by the KCE before the deadline specified in the call for proposals.
- The form has been completed in one of the following languages: French, Dutch or German.
- The form is complete and comprehensible. In particular, it provides sufficient information to support the proposal and to assess the level of priority of the proposed subject according to the evaluation criteria (see below).
- The proposed subject of study falls within the frame of the “right to be forgotten”. Questions requiring the funding of diagnostic or therapeutic interventional studies (clinical trials > KCE Trials calls), the development of clinical practice guidelines or the conduct of HTA or HSR studies (> calls for proposals for the KCE’s main research programme) will not be considered for the KCE’s “right to be forgotten” programme.
- The proposed study topic does not concern a specific individual case, but aims to study the life expectancy of a population of patients suffering from a cancerous/chronic disease.
This verification will be carried out by the KCE. Decisions will be documented.
Selection and prioritisation
1. In-depth analysis of proposals
Proposals that meet all the eligibility criteria (see above) will be allocated to KCE experts (the “KCE Evaluators”) to be rounded off. If necessary, the KCE evaluators might carry out additional research to obtain objective data that will enable the proposals to be evaluated according to the predefined selection criteria (see below), e.g. data from national and international sources describing the epidemiology of the disease, the existence of a Belgian register or international registers, etc.
2. Assigning scores to the topic proposals received
Topics will be selected based on evaluation criteria (relevance, scale of the health problem and feasibility of the study). Three KCE assessors will be allocated to this task.
Each assessment criterion will be rated on a scale from 1 to 5: 1 = inadequate; 2 = poor; 3 = satisfactory; 4 = good; 5 = perfect.
For each topic submitted, the sum and average total score obtained will be calculated for each criterion and included in an evaluation report. In the event of a difference of opinion regarding the awarded scores or the comments made in writing by the evaluators, the topic will be put up for discussion. The aim of these deliberations is to reach a consensus, which will be reflected in an adjustment of the scores.
The feasibility criterion is a crucial factor that requires in-depth analysis. This analysis will only be carried out for topics which have obtained a minimum score of 2/5 for the other two criteria.
A total score covering the 3 evaluation criteria will be calculated for each submitted topic. The topics will then be ranked based on their scores, from highest to lowest. The arithmetic sum of the 3 average scores given to each topic will determine its order of priority. The higher the sum, the higher the priority of the topic. It is therefore essential that each proposal contain as many arguments as possible in support of the selection criteria. The ranking, scores, comments and points discussed will be recorded in a report which will be sent to the evaluation committee (see below).
This classification will comprise three groups:
1. The projects with the highest overall scores that will actually be selected for the study programme.
2. Projects with a high score but which seem more difficult to implement. They will only be carried out if opportunities arise (in terms of time, human resources or international collaborations).
3. Projects to be excluded following an in-depth study of their feasibility and/or relevance.
3. Prioritisation of study topics by the evaluation committee
A consultation meeting will be organised with the members of the evaluation committee to propose the topics to be included in the KCE’s two-year research programme.
The committee responsible for evaluating the topics admitted for study will be made up of:
- Members of the KCE responsible for analysing the filed proposals, seeking additional information where necessary, and determining preliminary scores.
- Members of the Pricing Monitoring Committee responsible, in collaboration with the KCE, for finalising the scores and proposing priorities.
- Clinicians specialising in the management of the disease to be assessed may be invited to share their expertise with the assessment panel (decided on a case-by-case basis).
The members of the assessment panel will declare their interests before assessing the submitted proposals. In the event of a conflict of interest, the jury member concerned will refrain from taking part in the evaluation. Each member of the evaluation committee will evaluate each submitted topic individually. To ensure that the evaluation process is as neutral as possible, all proposals will be anonymised.
The priority ranking established by the evaluation committee will be submitted to the KCE Board for approval. The Board will make the final decision and select the subjects to be included in the KCE’s work programme.
A letter will be sent to the authors of the topic proposals to inform them of whether or not their proposal has been included in the KCE’s work programme and the arguments supporting this decision.
The work programme will be published on the KCE website.
