Research & Reports

Patient outcomes  World: First-ever global study finds massive healthcare inequity within and between countries

People are dying from preventable causes at rates higher than expected, according to the first-ever global study, which has uncovered massive inequity of access to, and quality of health care among and within countries, and concludes people are dying from causes with well-known treatments

Patient outcomes  Sweden: Study indicates patients are prescribed potentially futile drugs at end of life

Nearly half of older adults in Sweden take ten or more medications in their last months of life, often receiving drugs of questionable benefit, according to the first study conducted on the burden of end-of-life medications across an entire population

Patient outcomes  Sweden: Tablet device helps heart failure patients take the right dose of diuretics

A handheld tablet device is helping heart failure patients to manage their disease, according to research presented at the European Society of Cardiology meeting EuroHeartCare in Jonkoping, Sweden on Saturday (20 May)

Patient outcomes  US: Enhanced recovery after surgery programme improves outcomes

A comprehensive Enhanced Recovery After Surgery (ERAS) programme implemented at US healthcare provider Kaiser Permanente’s 20 Northern California medical centres involving nearly 9,000 patients, resulted in a one-third reduction in postoperative complication rates and a 21 per cent reduction in prescriptions of opioid painkillers

Patient empowerment  EU: Call to end disparity in access to innovative medicines

New approaches to drug regulation and reimbursement are needed to improve access to innovation, advance patients’ rights and ensure patients are involved in policy making and regulatory processes, according to speakers at the 11th European Patients’ Rights day, held in Brussels earlier this month

Patient empowerment  European Commission: Public consultation shows support for cooperation on Health Technology Assessment

The European Commission published the results of a public consultation it held to assess the opinions and attitudes of individual EU citizens, including patients, clinicians and health professionals, to future EU-level cooperation on HTA

PROs in healthcare technology and eHealth  EU: Midterm review calls for renewed push to digitise health care

In its midterm review of the Digital Single Market Strategy published earlier in May, the Commission set out further measures to advance digital health and care, and promote interconnectedness in European healthcare systems

Healthcare policy  US: Gap growing between longest and shortest lifespans in the US

Babies born today in 13 US counties have shorter expected lifespans than their parents did when they were born, according to a new study. For example, life expectancy at birth in Owsley County, Kentucky, was 72.4 years in 1980, dropping to 70.2 years in 2014

Patient-centred and value-based health policy  Netherlands: Study finds major differences among health technology assessment bodies

A comparative analysis of six European health technology assessment (HTA) bodies shows they have divergent approaches to integrating real world data into their assessments of the added value of new treatments

PROs in healthcare technology and eHealth  European Union: ehealth promises to increase vaccination coverage in Europe

A survey by the European Centre for Disease Prevention and Control (ECDC) shows 21 EU/EEA countries have in place, or are in the process of installing electronic systems for recording nationwide information on vaccination

 EU: Understanding value in health data ecosystems

The use of health data has the potential to offer significant benefits for patients, healthcare systems, research and innovation, but a sustainable and effective health data ecosystem is needed in order to realise the full potential of these data, according to report from RAND Europe

 US: Use of telemedicine for mental health in rural areas on the rise but uneven

New research points to a dramatic growth in the use of telemedicine for the diagnosis and treatment of mental health disorders in rural areas of the US, but that there is a strikingly uneven distribution of services across states

 UK: Wellcome Trust launches understanding patient data website

Research carried out by the UK medical research charity Wellcome Trust last year found only a third of people felt they had a good understanding of how the National Health Service (NHS) uses patient information

 EU/US: First collaborative definition of patient centricity published

A definition of patient centricity, drawn up in collaboration with patients and carers, has been published for use by the pharmaceutical industry.

 UK: Roll out of mobile and digital health technology could save NHS billions

Remote monitoring technology is the key to easing the NHS bed blocking crisis, according to a report by the Institution of Mechanical Engineers

 UK: Every £1 spent on public health saves an average of £14

Every £1 spent on public health returns an extra £14 on the original investment, on average, and in some cases, significantly more than that, according to a review of the evidence, published in the Journal of Epidemiology & Community Health

Patient-centred and value-based health policy  Ireland: First assessment in the EU finds measures to help smokers quit are effective and value for money

The first assessment in the EU of interventions to help people quit smoking and the comparative cost effectiveness of different approaches shows that all current interventions are more cost-effective than trying to stop without assistance

 UK: Some stroke survivors disregard doctors' advice on medications

Some stroke survivors say they are disregarding general practitioners' (GP) advice on secondary prevention medications, such as statins, with some patients stopping their medication completely, according to a study of an online stroke forum

PROs in healthcare technology and eHealth  European Commission: New e-health standards for Europe

Patient-centred and value-based health policy  Applying EU funds to restructure healthcare delivery: how and when to invest in new care models

In the face of chronic disease, an ageing population and a shortage of trained staff, Europe urgently needs to devise and implement new delivery models that will make its healthcare systems sustainable in the future.

PROs in healthcare technology and eHealth  European Observatory for Health Systems and Policies: harnessing big data for health

An article in the latest edition of WHO Europe’s Eurohealth assess the benefits of big data in healthcare and how policy changes in Europe might affect patients, policy-makers, providers and scientists.

Patient-centred and value-based health policy  Rare diseases: video report from launch of the European Reference Networks

In March the EU health commissioner Vytenis Andriukaitis formally launched the European Reference Networks

Patient empowerment  US: Patient support groups improve medication adherence

Peer-to-peer patient support groups have been shown to improve patient health literacy and increase patient empowerment in health decision-making

 Integrated care: tools and methodologies for implementation and assessment

Integrated care is a fundamental component of much-needed health and social care system reforms

 Good communication helps improve outcomes for heart patients

Patients with hardened arteries who had good communication with their healthcare providers were less likely to use the emergency room and more likely to comply with their treatment plans

Supported self-management  UK: give people with asthma tailored support to help them manage the condition

Helping people with asthma take control of their own illness reduces symptoms, improves quality of life, reduces use of emergency health services and even prevents deaths, according to a review of 270 studies carried out by researchers in the UK.

Patient-centred and value-based health policy  OECD: Online consultation asks how to improve access to innovative drugs

The OECD has launched an online consultation to get views on how to improve access to innovative therapies, whilst ensuring national drugs budgets do go through the roof.

PROs, PROMs and PREMs  Spain: Patients and doctors have different views on quality of life

Although patient-reported outcomes (PROMs) are being promoted as a way to optimise treatment, it is not clear that patients and doctors agree on how PROMs are interpreted.

Patient-centred and value-based health policy  Europe: new principles proposed for value-based assessment of rare disease therapies

The number of EU approved drugs for treating rare diseases is increasing but high prices and restrictive reimbursement policies are preventing patients from getting access.

Patient-centred and value-based health policy  EU lays the framework for cross border cooperation in rare diseases

European Commission: European Reference Networks connect 900 teams across Europe for the benefit of patients

PROs and PROMs implementation in clinical practice  Patients provide more information than clinicians when self-reporting adverse events

Cancer patients were both willing and capable of self-reporting adverse events and are able to provide more information than clinical investigators, according to a study in JAMA Oncology.

PROs in healthcare technology and eHealth  Nokia launches mobile phone Patient Care platform

Mobile phone company Nokia is diversifying into the regulated health sector with the launch of Patient Care, a range of services that will enable doctors and health professionals to remotely monitor their patients with smart devices.

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.