Efficiency hub

Organisations running human clinical trials have an ethical obligation to make their research findings public to advance medical science and to reduce the time it takes for innovative treatments to reach the public. In 2013, the European Federation of Pharmaceutical Industries and Associations (EFPIA) and the Pharmaceutical Research and Manufacturers of America (PhRMA) came together to release joint principles for responsible clinical trial data sharing to enhance research and scientific knowledge, advance patient care and improve public health.

Head and neck cancers (HNCs) are the ninth most common type of cancers in the UK. Treatment can be complex and have life-changing effects that require prolonged follow-up and rehabilitative care. People living with HNC within the Thames Valley Cancer Alliance have reported long travel distances and high costs as major issues in accessing follow-up care.

Clinical deterioration events (CDEs) are the rapid worsening of symptoms in inpatients that result in admission to the intensive care unit (ICU). Globally, 40% of paediatric cancer inpatients are admitted to the ICU. Of these admissions, 27% result in mortality. The use of paediatric warning systems (PEWS) has been found to reduce CDEs in children with cancer.

Life expectancy in Bhutan has increased in the past 30 years, causing a rise in non-communicable diseases, including cancer. This has led to an upswing in the demand for palliative care. In 2018, the first palliative care pilot programme was launched in Bhutan; previously, Bhutan had no palliative care provision due to a lack of infrastructure and trained staff.

Delays in access to cancer diagnosis and treatment leads to poorer survival outcomes. Poor communication from healthcare providers can stem from delays, and people with cancer may have unaddressed anxieties or feel uncertainty. All of these factors can negatively affect the mental wellbeing of those living with cancer.

Over 300,000 people die from cervical cancer annually around the world, with 90% of deaths occurring in low- and middle-income countries. It is often thought that this is partly due to a lack of access to human papillomavirus (HPV)-based cervical screening programmes, which have been shown to reduce mortality due to cervical cancer by almost 50%.

Cancer incidence rates are rising globally, with new cases predicted to increase by almost 50% by 2040. Population-based cancer registries are the gold standard for collection of cancer incidence data, but only 15% of the global population is covered by them. In 2011, the International Agency for Research on Cancer launched the Global Initiative for Cancer Registry Development (GICR) to support low- and middle-income countries and regions to set up their own population-based cancer registries.

People with cancer are regularly affected by poor mental health, with 52% reporting psychological distress. However, only 9% of people with cancer in Germany received inpatient psycho-oncological care.

Goals of care (GoC) are a person’s clinical and personal aims for the management of their condition. People with cancer in the US have reported low rates of GoC conversations with clinicians, and clinicians report a lack of preparedness in conducting these conversations.