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Patients can play active role in shaping drug development and treatment goals, but they need intelligible information to do so

A very comprehensive 2011 report that contains a basic introduction to PROMs and their potential to improve healthcare services, as well as recommendations for methods of data collection and interpretation and understanding outcomes.

As part of its regular review of health systems in the developed countries, the Organisation for Economic Cooperation and Development has been incorporating more statistics on what patients think of their treatments. This site includes a selection of results, and recommendations.

A 2016 policy paper that showcases the importance of measuring outcomes for greater transparency in and oversight of the performance of European healthcare systems.

One of the problems of analysing patient outcomes is discriminating clearly between different diseases and variants.That’s the case for type 1 and 2 diabetes – different syndromes, but not always analysed separately in the health data.

This provides a new look at the way patients are asked about the effect of the prescription drugs they take. While questionnaires about effectiveness, side-effects or other concerns are common, how standardised are they, or can they be?

Cancer is a horrible diagnosis for anybody – but it can seem especially tough for teenagers and young adults. How do you ask them about it? What can you learn from their answers, to treat others?

Kay Swinburne, a British member of the European Parliament envisions an intergovernmental future for the London-based European Medicines Agency. “Can’t the EMA become a much broader agency that serves not just the EU but the whole of Europe?” Swinburne asked at a Science|Business meeting last month.

The head of the health division at the OECD, Francesca Colombo, says members are making poor use of health data. She is calling for a broader collection of personal health information, to reflect the outcomes that matter to patients

The National Advisory Group on Health Information Technology in England advised the Department of Health and NHS England about transitioning to a more digital secondary healthcare system and provides 10 implementation recommendations.

Science|Business launches a new service to track the growing use of patient data in improving health systems

Diagnostics company MDxHealth has developed a test to target therapies more accurately, reducing the need for invasive biopsies and improving outcomes

Harvard economist Michael Porter argues that, to improve performance, healthcare systems need to measure not what goes in, but what comes out.

The EU-funded Innovative Medicines Initiative is making advances in harnessing health records at scale, unlocking the power of data to tackle hard-to-beat diseases