The USA’s new $1.1 billion comparative effectiveness research (CER) programme must focus on the needs of priority populations, President Obama and Congress have been told.

CER studies should particularly address the needs of groups which, traditionally, have been under-represented in medical research, such as racial and ethnic minorities, persons with disabilities and with multiple chronic conditions, the elderly and children, according to the Federal Coordinating Council for Comparative Effectiveness Research, which yesterday released its recommendations to the President and Congress.

This research should also complement the trend towards personalized medicine, it adds, noting that one of the advantages of large CER studies is the power to investigate effects at the sub-group level that often cannot be determined in a randomized trial. “This power needs to be harnessed so personalized medicine and comparative effectiveness complement each other,” says the report.

Moreover, it is critically important to be able to share the results of CER – also known as patient-centred research - with doctors and patients and to make better investments in how information is disseminated. Investments should be made in data infrastructure such as linking current data sources to enable answering CER questions, development of distributed electronic data networks and partnerships with the private sector, it says.

CER is necessary because, “due to astonishing achievements in biomedical science, clinicians and patients often have a plethora of choices when making decisions about diagnosis, treatment and prevention, but it is frequently unclear which therapeutic choice works best for whom, when, and in what circumstances,” says the report.

“Patients and their caregivers search in vain on the Internet or elsewhere for evidence to help guide their decisions. When they do find information, it may be informed by marketing objectives, not the best evidence,” it adds.

Welcoming the report, Health and Human Services (HHS) Secretary Kathleen Sebelius said she was impressed by the amount of public input that had gone into the study; the Council held three public “listening sessions” and also received comments for two months on its public website during the process of drawing up its recommendations.

The Council report concludes that CER is considered as a key piece of health reform, and the federal government must now demonstrate its capability to coordinate that investment, achieve impact and measure the results.

“Patients increasingly and appropriately want to take responsibility for their care. Therefore we have a responsibility to provide comparative information to enable informed decision-making. This patient-centred, pragmatic, real-world research is a fundamental requirement for improving care for all Americans,” it adds.