25th June 2013

National Voices: “National Voices is the national coalition of health and social care charities in England, with more than 150 member organisations. We work together to strengthen the voices of patients, service users, carers, their families and the voluntary organisations that work for them. We think it vital that patients have clear and accurate information about therapies: their relative efficacy, risks, harms and side-effects. Unless all such information is available, regulators, the NHS and doctors are not in a position to make safe, informed recommendations, nor are patients in a position to make informed decisions, or give informed consent. The incomplete availability of clinical trial data is therefore a threat to the health and safety of patients; it makes a mockery of the principles of transparency, shared decision making and evidence-based medicine. It is unethical and indefensible. The failure to register or publish the outcomes of clinical trials can also be seen as a form of abuse of those who have participated in clinical trials. Government, academia, publishers, regulators and the pharmaceutical industry all have a responsibility to ensure that this state of affairs is not allowed to persist.”