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. 2007 Oct 11;16(2):161–175. doi: 10.1007/s10728-007-0069-1

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