Table 2.
Views towards a national registry of MS patients or IFNβ users
Actor | Judgement of solutiona | Problem definition | Background theories | Normative values |
---|---|---|---|---|
Ministry of health (1996) | + For evaluation long-term effects |
Uncertainty on (meaning of) effects of IFNβ | Only medicines of which evidence of effectiveness is available at the expense of the community If no evidence on effectiveness, use is inappropriate |
Efficiency |
PAM Staff | + Database with only limited patient data to take samples for research or Database with all relevant data for research |
For each new medicine a study on effectiveness is inefficient Health insurance companies judged reimbursement requests differently, leading to difference in health care |
Aim of national database to optimise IFNβ prescription: to monitor use of IFNβ in practice (which patients (indications), volume, costs) and to evaluate effectiveness IFNβ | Efficiency |
PAM Staff (2003) | − Registration without central judgement committee difficult |
Central committee no longer relevant No problems perceived |
Central pre-utilisation judgement provides a minimal registration of patient data | Efficiency |
Medical advisor of health insurance company | + Prospective database only way to assess long-term effectiveness |
Judgement of relative value as compared to alternative interventions not systematically but only in the neurologists head | Expensive drugs are financed from public funds Pharmaceutical industry’s power is underestimated |
Clear vision from the ministry of health on pharmacy Quality of care |
Neurologist | + Meaningful for evaluating effectiveness of medicines and knowledge on MS National coverage might be difficult |
Clinical trials have limited follow up period Distrust amongst neurologists |
MS is a chronic disease, invalidating on long term MS neurologists have their own “kingdoms” |
Quality of care Increase knowledge on disease and treatment |
a‘+’ actor defines intervention as meaningful; ‘−’ intervention is not meaningful