"Be an ambassador for change that you would like to see": a call to action to all stakeholders for co-creation in healthcare and medical research to improve quality of life of people with a neuromuscular disease.

Background: Patient and public involvement for co-creation is increasingly recognized as a valuable strategy to develop healthcare research targeting patients' real needs. However, its practical implementation is not as advanced and unanimously accepted as it could be, due to cultural differences and complexities of managing healthcare programs and clinical studies, especially in the rare disease field.

Main Body: The European Neuromuscular Centre, a European foundation of patient organizations, involved its key stakeholders in a special workshop to investigate the position of the neuromuscular patient community with respect to healthcare and medical research to identify and address gaps and bottlenecks.

The Position of Neuromuscular Patients in Shared Decision Making. Report from the 235th ENMC Workshop: Milan, Italy, January 19-20, 2018.

In the era of patient-centered medicine, shared decision-making (SDM) - in which healthcare professionals and patients exchange information and preferences and jointly reach a decision - has emerged as the gold standard model for the provision of formal healthcare. Indeed, in many geographical settings, patients are frequently invited to participate in choices concerning the design and delivery of their medical management. From a clinical perspective, benefits of this type of patient involvement encompass, for example, enhanced treatment satisfaction, improved medical compliance, better health outcomes, and maintained or promoted quality of life.

Professionals' Use of a Multidisciplinary Communication Tool for Patients With Dementia in Primary Care.

In this descriptive study, the use of a professional e-communication tool, Congredi, is evaluated. Ninety-six Congredi records of patients with dementia could be divided into the subgroups low-complex care (n = 43) and high-complex care (n = 53). If Congredi is an adequate communication tool for professionals, the changing involvement of caregivers must also be reflected within the two subgroups.

The challenge of involving elderly patients in primary care by using an electronic communication tool with their professionals: a mixed methods study.

Background: Elderly patients in primary care often have multiple health problems,with different healthcare professionals involved. For consistency in care, it is required that communication amongst professionals and patient-systems (patient and informal-carers) be well tuned. Electronic-communication can make it easier for patient-system to be active in care.

Level of Digitization in Dutch Hospitals and the Lengths of Stay of Patients with Colorectal Cancer.

A substantial amount of research has been published on the association between the use of electronic medical records (EMRs) and quality outcomes in U.S. hospitals, while limited research has focused on the Western European experience.

How Professionals Share an E-Care Plan for the Elderly in Primary Care: Evaluating the Use of an E-Communication Tool by Different Combinations of Professionals.

Background: Home-dwelling elderly patients with multimorbidity are at risk of fragmentation of care because of the many different professionals involved and a potentially unclear level of communication. Multidisciplinary communication seems to occur incidentally. Mutual feedback is needed for a professional team to provide consistent care and adequate support to the patient system.

Exploring the effects of patients taking a vigilant role in collaborating on their e-medication administration record.

Objective: Errors in the electronic medication administration record (eMAR) occur in 25.6% of cases, mainly due to communication errors. The aim of this study is to investigate whether the quality of the eMAR improves when patients play a vigilant role by checking their medication using a patient communication tool linked to their eMAR (eMAR-PCT) to communicate asynchronously with the pharmacist about errors.

The Association between eHealth Capabilities and the Quality and Safety of Health Care in the Netherlands: Comparison of HIMSS Analytics EMRAM data with Elsevier's 'The Best Hospitals' data.

Objective: To test the hypothesis that advanced electronic medical record (EMR) capabilities are associated with better quality and safety of hospital care.

Methods And Findings: We used data from the HIMSS Analytics EMR Adoption Model (EMRAM(SM)) to measure the adoption and use of information technology in Dutch hospitals. To measure the quality and safety of healthcare in Dutch Hospitals we used select data from the publicly available basic set and the safety set of the Health Care Inspectorate (IGZ) and the Dutch Health Care Transparency Program 'Zichtbare Zorg' (ZIZO) program.

How spouses evaluate Nursing Home Placement of their demented partner: a study about the end of perseverance time.

Aim: This study was about the final decision by spouses to have their demented partner placed in a nursing home. The central question was whether the admission took place in the right time in their point of view.

Method: Fourteen partners of persons with dementia evaluated the nursing home placement.

The perseverance time of informal carers of dementia patients: validation of a new measure to initiate transition of care at home to nursing home care.

Background: Health care systems aim to involve as much informal care as possible and dementia patients prefer to stay home as long as they can. In this context, perseverance time (Pt)-the period that the informal carer indicates to be able to maintain current care if the situation remains stable-is an important concept.

Objective: The aim of this study was to introduce the concept Pt and validate it in a sample of informal carers of dementia patients living at home.

The effects on health behavior and health outcomes of Internet-based asynchronous communication between health providers and patients with a chronic condition: a systematic review.

Background: In support of professional practice, asynchronous communication between the patient and the provider is implemented separately or in combination with Internet-based self-management interventions. This interaction occurs primarily through electronic messaging or discussion boards. There is little evidence as to whether it is a useful tool for chronically ill patients to support their self-management and increase the effectiveness of interventions.

Global payment for health services as a solution in the financial crisis in Europe.

In these financial difficult years many European governments used global ceilings to control costs of health services. Two scenarios are thinkable. The first is that all individual providers get a budget for their own costs: general practitioners, specialists, hospitals, nursing homes and mental health institutes.

The care pathway: concepts and theories: an introduction.

This article addresses first the definition of a (care) pathway, and then follows a description of theories since the 1950s. It ends with a discussion of theoretical advantages and disadvantages of care pathways for patients and professionals. The objective of this paper is to provide a theoretical base for empirical studies on care pathways.

Integrating care for people with depression: developments in the Netherlands.

Introduction: In this article we describe the history and present state of integrated care for people with depression in the Netherlands. The central question is: what are the developments in integrated care for people with depression in the Netherlands?

Methods: WE DESCRIBE THESE DEVELOPMENTS FROM THE ROLE OF AN OBSERVER, AND MAKE USE OF SEVERAL SOURCES: important Dutch policy documents and research documents, our own national survey carried out in 2007, a number of reports and project descriptions and searches in PubMed and Google. Also key people were contacted to supply additional information.

The impact of critical illness on perceived health-related quality of life during ICU treatment, hospital stay, and after hospital discharge: a long-term follow-up study.

Background: The time course of changes in health-related quality of life (HRQOL) following discharge from the ICU and during a general ward stay has not been studied. We therefore studied the immediate impact of critical illness on HRQOL and its recovery over time.

Methods: In a prospective study, all patients admitted to the ICU for > 48 h who ultimately survived to follow-up at 6 months were included.