Table 1 Key points from the interviews
Theme | Subtheme | Key points |
|---|---|---|
What constitutes CED | What is worthy of research | • Conditionality is most important, e.g., drug or device, characteristic of disease |
What constitutes uncertainty and how should it be measured | • Determining uncertainty is an art | |
What constitutes evidence and how should it be managed | • How much agreement should there be on minimum evidence expectations | |
• CED can become a never ending series of studies | ||
Lack of a systematic approach/governance structure | Role of different stakeholders | • Where should leadership rest |
• Over involvement of multiple stakeholders | ||
• Engage disease advocacy groups | ||
Translation of research into policy | • Requires guidelines and a discontinuation policy | |
• Limited data and financial considerations are barriers | ||
• Justifying the continued flow of funds requires policy standardization and a formal agreement of the strategy to be put in place | ||
Corporate influence and overt politics in CED | The political process as part of CED | • Political processes in terms of the source of money and decision-making are at a level above researchers |
• Political processes can undermine the ability to achieve real change | ||
• Researchers blame policy makers and decision makers for problems in translating research into policy | ||
The role of the pharmaceutical industry | • Researchers, policy makers and decision makers are all skeptical about the role of industry | |
Alternatives and barriers to CED | Alternatives | • Preference expressed for risk-sharing and tax breaks over CED |
Barriers – data and privacy issues | • Concern that decision makers are not willing to be accountable | |
• Doctors not cooperative enough | ||
• Need better access to data and the ability to link databases | ||
• Registries useful but come with their own set of problems |