The Citizens Council provides NICE with a public perspective on overarching moral and ethical issues that NICE should take into account when producing guidance. Made up of members of the public, broadly representative of the adult UK population, the Council operates through a “citizens’ jury” style meeting, to explore and respond to a question set by NICE.

At its May 2009 meeting, the Citizens Council was asked to provide insight into the public’s view of innovation, and to explore which features of innovation should be considered when assessing its value, specifically in the context of health care. The aim was to provide a report to be fed into a study on the value of innovation in health care being carried out on behalf of NICE by Sir Ian Kennedy.

The Council was asked: “What makes innovation valuable to you?” From a list of features that might make a healthcare innovation valuable, each member was asked to choose the three they felt were most valuable. The features, with number of votes shown in brackets, were:

• It increases quality of life (26)
• Other innovations may be developed from it in the future (11)
• A large number of people will benefit from it (10)
• It saves your life (9)
• It increases life expectancy (9)
• It meets a previously unmet need (6)
• It prevents a condition (5)
• It cures a condition (5)
• There are few other treatment options (1)
• It reduces risk to the patient (0)
• It has a one-off cost rather than ongoing costs (0)

We were also asked to tackle two other questions. First, if the innovation is more expensive than NICE’s current cost per QALY gained threshold and does not demonstrate benefits at the moment but could well do so in the future, what should NICE do? Fifteen of us (a majority of two) responded that we should say “no” for the present, and ask the developers to fund and carry out more research themselves. The remaining 13 of our members also wanted us to say “no” for the present, but preferred that further research be co-funded for the developers on condition that the public would get a return proportionate to any investment.

For a clearer insight into these conclusions we were asked more specifically who should bear the costs and risks of research and development. We had five choices: the developer; the NHS; the taxpayer; charities; joint sharing between taxpayer and developer. Seventeen of us felt that the developer of the technology should bear the full cost. The rest, 11 in total, opted for joint sharing between the taxpayer and the developer.

We also offered NICE a raft of suggestions (listed in the body of the report) on how it might improve its communication with the public about innovation.