Research & Reports

PROs and PROMs implementation in clinical practice  New EU guide to cost-effective and value-based cancer care will save lives and money

A three-year collaboration involving 25 EU countries and 126 partner organisations has culminated in the publication of the European Guide on Quality Improvement in Comprehensive Cancer Control.

PROs in healthcare technology and eHealth  OECD countries get ready to use electronic data to improve healthcare quality

An analysis of the level of preparedness of each EU member state to implement electronic health records shows there is an emerging effort in most countries to develop new information technology tools for managing large datasets and using electronic health records to improve the quality and performance of Europe’s healthcare systems.

PROs and PROMs implementation in clinical practice  Cancer immunotherapies require a new value-based model of patient-reported outcomes

Therapies that prime a patient’s own immune system to recognise and attack tumours are revolutionising cancer treatment. However, the high cost of novel immunotherapies raises concerns about access.

Healthcare policy  New recommendations for measuring health benefits of treatments

Health-state utility is a health economics measurement that determines a patient’s health status and quality of life following a treatment.

 Netherlands: Erasmus Medical Hospital implements standards to improve treatment of children with cleft lip and palate

In January 2017, Erasmus MC began adapting its care pathways to match the International Consortium for Health Outcomes Measurement (ICHOM) standard set for all cleft palate patients , following a successful trial in 2016.

PROs in healthcare technology and eHealth  UK and Australia: Electronic monitoring of adherence improves clinical outcomes in children with asthma

Smartinhaler is a personal medical monitoring system developed by Adherium Ltd of New Zealand.

Patient-centred and value-based health policy  European Commission: Cost of unsafe care and cost-effectiveness of patient safety programmes

A European Commission report by Gesundheit Österreich Forschungs- und Planungs GmbH and SOGETI evaluates the impact of patient safety and cost-effectiveness programmes in healthcare systems of EU member states.

PROs, PROMs and PREMs  Canada, Netherlands and US: Interpreting patient-reported outcomes data to patients and clinicians

Patient-reported outcomes have proved to be useful for better healthcare management and clinical performance.

PROs in healthcare technology and eHealth  Germany, Switzerland and US: Brain-computer interface system allows locked-in syndrome patients to communicate

For the first time in clinical practice, doctors have used a brain-computer interface to communicate with patients suffering from complete paralysis and get responses to simple “yes” or “no” questions, by detecting distinct patterns in patients’ brain activity.

Patient-centred and value-based health policy  OECD: fifteen recommendations to boost the use of patient outcomes

Health ministers from OECD countries, joined by other seven states, gave the go-ahead to the development of international league tables comparing patient outcomes at a meeting in Paris on 17 January.

PROs and PROMs implementation in clinical practice  France: patient satisfaction ratings of 1,000 hospitals are now available online.

December 15th saw the first publication of patient satisfaction rankings in France, with data for 983 hospitals now available online. The ratings are based on the opinions of 56,759 patients who spent more than 48 hours at the facilities.

PROs in healthcare technology and eHealth  Stanford University: New wearable sensors can help detect serious illness in the pre-symptomatic stages

Scientists from Stanford have published recent findings about the use of new types of wearable sensors that allow frequent and continuous measurements of body functions, including heart rate, skin temperature, blood oxygen levels, and physical activity.

Patient-centred and value-based health policy  US: Challenges to the implementation of PROs in clinical practice for patients with upper extremity disability and injury

Scientists at the Henry Ford Hospital in Detroit and the Rush University Medical Center have highlighted potential barriers to the implementation of patient reported outcome measures for patients that suffer from severe forms of disability and injury.

PROs in healthcare technology and eHealth  University of North Carolina Cancer Center: Cost and technology challenges of harnessing patients’ voices in cancer clinical care

Work is needed to reduce the barriers to electronic reporting of patients’ symptoms in between clinical visits, according to Ethan Basch, director of the UNC Lineberger Cancer Outcomes Research Programme, writing in the New England Medical Journal.

PROs and PROMs implementation in clinical practice  Canada: Use of abbreviated PROs for prediction of survival in early-stage colorectal cancer

Researcher and physicians from several Canadian universities reported on the effectiveness of abbreviated forms of patient reported outcomes (PRO) measures to inform health professionals about patients with a comparatively severe prognosis of colorectal cancer.

Patient-centred and value-based health policy  Ireland: ten new standards to improve the quality of data collection in health

The Irish government plans to apply the new indicators in all the medical centres in the country, to improve the collection and quality of health and social care data.

 European Commission: Big data in public health, telemedicine and healthcare

A European Commission report describes ten examples of the implementation of big data in health from across member states and sets out policy recommendations for improving the performances of European healthcare systems

 Patient preferences in devices for self-reporting outcomes in clinical trials

Research groups in Geneva and Boston surveyed 103 subjects with chronic obstructive pulmonary disease (COPD) about their preferences for using different types of electronic devices in clinical trials, including computers, internet and smartphones.

 UK report on interpreting patient-reported outcomes from clinical trials

Researchers from the University of London, AstraZeneca and GlaxoSmithKline have developed a set of questions for practicing clinicians to consider when reviewing the results of patient-reported outcome (PROs) measures and effectiveness of medical procedures.

 Ten actions to put people and communities at the heart of health and wellbeing

The final report of the Realising the Value programme, an 18-month programme funded by NHS England in support of its Five Year Forward View sets out ten key actions on what should be done and how people need to work differently, to put people and communities at the heart of health and wellbeing.

 Germany: Web technologies encourage breast cancer patients to report symptoms more than ever

This systematic review of PRO measurements in cancer clinical trials in Germany identified studies that use these measures and assessed the feasibility of collecting this type of patient-reported data in cancer clinical practice.

 Drivers and barriers to acceptance of web-based health care in Germany

Researchers at the Medical Centre of the Gutenberg University in Mainz conducted a study to determine the extent of acceptance of web-based aftercare among patients in in-patient care.

 Getting the most out of PROMs: Putting health outcomes at the heart of NHS decision-making (King’s Fund)

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.

 Health at a Glance 2015 (OECD)

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.

 Enhancing value in European health systems: The role of outcomes measurement (FIPRA)

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

 US: Better data needed on quality-of-life measures for type 1 diabetes patients

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.

 UK: Patient questionnaires about the use of medicines could be improved

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?

 Denmark: What’s it like to be young and have cancer? Development of a questionnaire

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?

 Measuring Medicine-related Experiences from the Patient Perspective: A Systematic Review

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.

 UK: Oxford group finds outcomes 45% of clinical trials aren’t reported

A research group at the University of Oxford reports developing an online tool to track unreported results. It compares the US Food and Drug Administration’s list of permissions to start trials with the published reports of those trials online. The group notes the methodology isn’t perfect, but does provide some estimates on the extent of the problem.

 A quarter of CT scanners need replacement, industry group says

The report says equipment installed in hospitals is older than ever before, and says about 3,000 of the CT units are obsolete. Out-dated devices are unable to use the latest advances in the field, which would mean less radiation exposure for patients.

 EU ‘blueprint’ urged for digital innovation in health

The report outlines several possible actions that the Commission and member-states could take to coordinate their digital health policies better, including a three-year plan for action.

 Czech Republic: Real-World Outcomes in Patients with Multiple Sclerosis

Patients completed a questionnaire assessing outcome parameters including disability progression and work capability, to assess the effectiveness of Novartis’ fingolimod (Gilenya) in the treatment of multiple sclerosis.

 UK: Study of patient satisfaction after surgery to correct congenital ear deformities sets out national benchmark for care

A study was performed at Great Ormond Street Hospital (GOSH), London and the Royal Hospital for Sick Children (RHSC) in Edinburgh to assess patient satisfaction rates and understand how to improve outcomes.

 Scotland: Improving cancer pain management with patient-reported outcome measurements

The study carried out by researchers at Aberdeen University, provides a guide to how to improve the existing PROMs feedback methods in cancer pain management.

Patient-centred and value-based health policy  Study of 243 hospitals points to the need to examine the evidence before de-skilling nursing care

A new study has shown that using nursing assistants instead of professional nurses not only decreases patient satisfaction but also increases the risk of dying in hospital.

 Denmark: PROMs are needed for treatment of eating disorders

The PROM scores for anorexia nervosa and other unspecified eating disorders, indicate that patient-reported assessments are more indicative of patients’ eating disorder symptoms than clinician evaluations.

 Future Health Index: barriers to adopting integrated healthcare

The study, commissioned by the electronics company Philips, covers Australia, Brazil, China, France, Germany, Japan, the Netherlands, Singapore, South Africa, Sweden, the United Arab Emirates, the UK and the US.

Healthcare policy  Denmark: primary care needs to be more patient-centred says OECD

Patient surveys show that Danes rate their GP care highly, with 91 per cent giving a positive assessment compared to a European Union average of 84 per cent in a recent survey, published by the OECD.

 Israel: taking 900 steps a day is the fastest way for older patients to leave hospital

On average 18.4 per cent of the patients walking 900 or more steps saw their condition worsen for reasons associated with being in hospital. Of those who took fewer steps, 55.4 per cent saw their condition worsen.

Patient-centred and value-based health policy  A simple and objective metric for verifying the data quality of cancer registries

In order to provide a more objective way of assessing the quality of cancer registry data, scientists at the EU’s Joint Research Centre investigated whether cancer incidence rates obeyed Benford's law, or the law of first digits.

 UK: GP practices inspections are driving up quality of care

The Chief Inspector of General Practice found 75 of the practices to be good, 16 to require improvement, and two to be inadequate.

Patient-centred and value-based health policy  Call for the EU to create a centralised health technology assessment body

There should be a greater effort to create a harmonised system for health technology assessment (HTA), according to a paper issued by the Institute of Competitiveness (I-Com Europe), an Italian think tank.