Research & Reports

 GERMANY & UK: Questionnaires can be a good predictor of survival rates in multiple sclerosis

The way in which patients with multiple sclerosis answer questionnaires could help to predict their survival rate from the disease, according to a new study which shows that MS patients with higher scores on a standardised questionnaire were more likely to die in the next 10 years compared to those who recorded lower scores

 US: Call for coordinated care for high-needs patients to improve outcomes and cut spending

With nearly half of US healthcare budgets accounted for by 5 per cent of patients, improving health outcomes and curbing spending requires those with high needs to be identified and provided with coordinated services through successful care models that link medical, behavioural, and community resources, according to a report from the National Academy of Medicine

 EU: New study reveals the high cost of traumatic brain injury in years of life lost

Traumatic brain injury (TBI) is a serious public health threat contributing to mortality and morbidity around the world, according to a study in PLOS Medicine that quantifies the burden of TBI on the populations of Europe

 US: 20-year study shows surgery for early prostate cancer may not save lives

A study that began in 1994 has provided further evidence that prostate cancer surgery offers negligible benefits to many men with early-stage disease

 UK: New commissioning guide will help in tailoring care

The first openly-available comprehensive resource of measures relating to patient experience and person-centred care has been published in a single guide for health commissioners in the UK

 US: New model for classifying patients could lead to better end of life care

In the US, Medicare policies governing cancer patients’ end-of-life care are based on generalised statistics, such as average survival time and treatment costs, that often fail to reflect the variety of experiences across patient subpopulations, as well as among individual patients, according to a new study led by Harvard Medical School researchers, published in the July issue of the journal Health Affairs

 EU: EMA and national health technology assessment bodies set up single gateway to advice

After working together for several years the European Medicines Agency (EMA) and the European Network for Health Technology Assessment (EUnetHTA) have formally launched a new joint platform allowing drug developers to get simultaneous advice on how to structure clinical development programmes to provide safety and efficacy data for EMA approval and cost-effectiveness data for HTA assessments

 US: Don’t leave older people behind when designing wearable technology

Wearable devices can provide users with constantly updated medical information, tracking cardiac health, identifying potential illnesses, and serving as emergency alert systems, among other benefits

 UK: people trust medical advice from family and friends more than evidence from research

Only 37 per cent of the public trust evidence from medical research, compared to 65 per cent who trust the experiences of their friends and family, according to a report by the Academy of Medical Research.

 US: first results from the National Poll on Health Ageing

The University of Michigan Institute for Healthcare Policy and Innovation (IHPI) has released the first results from the National Poll on Healthy Aging (NPHA), starting by publishing data on prescription drug use for people between the ages of 50 and 80

 World: Call for urgent action to close gap in cancer deaths between rich and poor countries

Over the past 30 years, cancer control measures have led to rising life expectancy in rich populations, but these gains have yet to be seen in poorer populations, according to a study in the British Medical Journal

 US: New report finds no conclusive evidence that interventions prevent dementia

The evidence that cognitive training, blood pressure management and increased physical activity might slow cognitive decline and the onset of dementia is encouraging but insufficient to justify a public health campaign focused on their adoption, according to a new report from the US National Academies of Sciences, Engineering, and Medicine

 EU: Network set up to uncover causes of sudden cardiac arrest and compare treatments

A European network has been created to bring the power of numbers to uncovering the causes of sudden cardiac arrest and compare outcomes of different treatments

 US: DNA sequencing of healthy patients reveals that many carry rare genetic disease risks

Whole genome sequencing involving the analysis of all three billion pairs of letters in an individual’s DNA has been hailed as a technology that will usher in a new era of predicting and preventing disease

 Europe: health care expenditure decreases mortality rates

Higher health care expenditure was associated with lower amenable mortality (that is, rates of the deaths that are potentially preventable with available treatments) in seventeen European countries, according to a new study

 UK: Older adults under-referred for mental health therapies

A study by researchers at the universities of Plymouth and Exeter found that older people are not being referred for mental health support nearly as frequently as their younger counterparts, despite the fact that they achieve better outcomes when they are referred

 US: Web-based system for self-reporting symptoms helps cancer patients live longer

A randomised clinical trial of 766 patients has shown that a simple intervention - a web-based tool that enables patients to report their symptoms in real time, triggering alerts to clinicians -can have major benefits, including longer survival

 International trial: Common surgical treatment for melanoma does not improve overall survival

Patients who receive the standard surgical treatment for melanoma that has spread to one or more key lymph nodes do not live longer, according to a major new study

 US: Study shows texting as good as medication at improving Type II diabetes management

Low-income Hispanics with Type II diabetes who received health-related text messages every day for six months saw improvements in their blood sugar levels equivalent to those resulting from some glucose-lowering medications, researchers at the Scripps Whittier Diabetes Institute reported

 Norway: For headache, telemedicine may be as effective as in-person visit

For people with headache, seeing the neurologist by video for treatment may be as effective as an in-person visit, according to a Norwegian study published in Neurology, the medical journal of the American Academy of Neurology

 Finland: Artificial intelligence assists in the home treatment of heart patients

The University of Tampere and Tampere University Heart Hospital are using artificial intelligence (AI) tools to recognise serious difficult to predict complications as early as possible in the home care of patients following a heart attack

 US: Phone-based transitional care programme has high engagement among surgical patients

For patients who undergo complex abdominal operations in the US, poor transitions from the hospital to home contribute to hospital readmission rates ranging from 13 to 30 percent

 Sweden: High-sensitivity assay gives more reassurance to chest pain patients

Patients in Sweden’s emergency clinics complaining of chest pain are evaluated using the recently introduced high-sensitivity troponin T assay

 US: Quality improvement measures cut hospital readmissions but do not always produce savings

Efforts to reduce hospital readmissions are working, but they are not always saving money, according to a new study by healthcare provider Cedars-Sinai, which systematically evaluated the effectiveness and financial benefit of quality improvement programmes at medical centres in the US and elsewhere.

 US: Health plan Harvard Pilgrim signs outcomes-based contracts with AstraZeneca

The US health plan Harvard Pilgrim Health Care has signed two outcomes-based contracts with AstraZeneca for its acute coronary disease drug Brilinta and Bydureon, a treatment for Type II diabetes, in which the cost of the drugs will be linked to their effectiveness in actual patients.

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

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

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 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 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  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  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

 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

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

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

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

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

 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

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: 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

 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

 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: 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

 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

 Integrated care: tools and methodologies for implementation and assessment

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

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

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

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  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.

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.

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  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.

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.

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  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.

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

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.

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.

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  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  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.

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.

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 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.

 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.

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.

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.

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.

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  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.

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.

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.

 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.

 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.

 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.

 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.

 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.

 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

 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.

 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.

 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.

 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.

 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.

 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.