"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 workshop took place in Milan (Italy) on January 19-20, 2018, involving 45 participants who were mainly representatives of the patient community, but also included experts from clinical centers, industry and regulatory bodies. In order to provide practical examples and constructive suggestions, specific topics were identified upfront. The first set of issues concerned the quality of life at specific phases of a patient's life, such as at the time of diagnosis or during pediatric to adult transition, and patient involvement in medical research on activities in daily living including patient reported outcome measures. The second set of issues concerned the involvement of patients in the management of clinical research tools, such as registries and biobanks, and their participation in study design or marketing authorization processes. Introductory presentations were followed by parallel working group sessions, to gain constructive contributions from all participants. The concept of shared decision making was used to ensure, in discussions, a partnership-based identification of the wishes and needs of all stakeholders involved, and the "ladder of participation" tool served as a model to evaluate the actual and the desired level of patients' involvement in all topics addressed. A general consensus on the outcome of the meeting was collected during the final plenary session. This paper reports the outcome of the workshop and the specific suggestions derived from the analysis of the first set of topics, related to quality of life. The outcomes of the second set of topics are reported elsewhere and are only briefly summarized herein for the sake of completeness. CONCLUSIONS: The neuromuscular community proved to be very active and engaged at different levels in the healthcare initiatives of interest. The workshop participants critically discussed several topics, providing practical examples where different stakeholders could play a role in making a change and bridging gaps. Overall, they indicated the need for education of all stakeholders for better communication, where everyone should become an ambassador to promote real change. Support should also come from institutions and healthcare bodies both at structural and economic level.

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. Yet, although the theory and enactment of SDM in healthcare are well-described in the literature [1-3], comparatively less attention has been devoted to contextualizing questions relating to if, when, and how to include patients in decisions within medical research. In this context, patient involvement would be expected to be potentially relevant for and applicable to a wide range of activities and processes, from the identification of research priorities and development of grant applications, to the design of patient information and consent procedures, formulation of interventions, identification and recruitment of study sample populations, feasibility of a clinical trial, identification, selection, and specification of endpoints and outcomes in clinical trials and observational studies, data collection and analysis, and dissemination of results. To this end, 45 clinicians, healthcare professionals, researchers, patients, caregivers, and representatives from regulatory authorities and pharmaceutical companies from 15 different countries met to discuss the level of involvement of patients with neuromuscular diseases, specifically in the following settings of medical research for neuromuscular diseases: i) registries and biobanks; ii) clinical trials; and iii) regulatory processes. In this report, we present summaries of the talks that were given during the workshop, as well as discussion outcomes from the three topic areas listed above.

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. We hypothesized that use would be more intensive in the high-complex group in comparison with the low-complex group. Data were gathered during 42 weeks. Results showed that the mean number of care activities in the high-complex group was significantly higher than in the low-complex group (10.43 vs 5.61, P = .001). The number of professionals involved with the high-complex care group (3.58) was higher compared to the low-complex care group (2.51) (P = .000). The most frequent use was by case managers and nurses (43.4%) in the high-complex group and by several case managers (41.9%) in the low-complex group. It was concluded that professionals used Congredi adequately in the multidisciplinary care of patients with dementia because the changing involvement of caregivers and the level of care activities were reflected in the use of Congredi.

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. OBJECTIVE: To examine whether an e-communication tool (Congredi) designed for professionals, including a care plan and secure e-mail, is usable for patient-systems and what their experiences are. METHODS: In a multi-method study, home-dwelling elderly patients with two or more professionals were invited to use Congredi; data were gathered from the system after 42 weeks. Also semi-structured interviews were undertaken with patient-systems with topics retrieved from literature. Analysis took place by two researchers independently; the themes were extracted together by consensus. RESULTS: Data about actual use of the tool were gathered from 22 patients. Four profiles of Congredi-users were distinguished, varying in intensity of use. Data from  interviews with members of patient-systems (n = 7) showed that they were motivated and able to use Congredi. Barriers in daily use were limited participation of professionals, unanswered e-mail and not being alerted about actions. Despite limitations, patient-systems retained their motivation. CONCLUSION: Congredi was usable for patient-systems. The barriers found seem not to be tool-related but primarily user-related. An important barrier for daily use was limited active participation of involved professionals in a complete feedback loop. Potential for future implementation was found, as patient-systems were intrinsically motivated for better feedback with the professionals, even though in this study it only partly met their expectations.

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. The purpose of this study is to explore the association between the use of EMR technologies in Dutch hospitals and length of stay after colorectal cancer surgery. Two data sets were leveraged for this study; the HIMSS Analytics Electronic Medical Record Adoption Model (EMRAMSM) and the Dutch surgical colorectal audit (DSCA). The HIMSS Analytics EMRAM score was used to define a Dutch hospital's electronic medical records (EMR) capabilities while the DSCA was used to profile colorectal surgery quality outcomes (specifically total length of stay (LOS) in the hospital and the LOS in ICU). A total of 73 hospitals with a valid EMRAM score and associated DSCA patients (n = 30.358) during the study period (2012-2014) were included in the comparative set. A multivariate regression method was used to test differences adjusted for case mix, year of surgery, surgical technique and for complications, as well as stratifying for academic affiliated hospitals and general hospitals. A significant negative association was observed to exist between the total LOS (relative median LOS 0,974, CI 95% 0.959-0,989) of patients treated in advanced EMR hospitals (high EMRAM score cohort) versus patients treated at less advanced EMR care settings, once the data was adjusted for the case mix, year of surgery and type of surgery (laparoscopy or laparotomy). Adjusting for complications in a subgroup of general hospitals (n = 39) yielded essentially the same results (relative median LOS 0,934, CI 95% 0,915-0,954). No consistent significant associations were found with respect to LOS on the ICU. The findings of this study suggest advanced EMR capabilities support a healthcare provider's efforts to achieve desired quality outcomes and efficiency in Western European hospitals.

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. eHealth technology can improve outcomes. OBJECTIVE: The aim of this study was to evaluate the use of a tool, Congredi, for electronic communication by professionals for the care of home-dwelling elderly patients. METHODS: The research group was recruited through general practices and home care organizations. Congredi, a tool designed for multidisciplinary communication, was made available for professionals in primary care. It consists of a care plan and a communication channel (secure emailing). Professionals opened Congredi records for elderly patients who had 2 or more professionals involved. The records were the unit of analysis. Data were gathered from the Congredi system over a period of 42 weeks. RESULTS: An inclusion rate of 21.4% (203/950) was achieved; nearly half of the participants were nurses. During the study, professionals were active in 448 patient records; female professionals were prevalent. In the patient records, 3 types of actions (care activities, emailing, and process activities) were registered. Most activities occurred in the multidisciplinary records (mean 12.2), which had twice the number of activities of monodisciplinary records (6.35), and solo records had a mean of 3.43 activities. Most activities were care activities (mean 9.14), emailing had a mean of 0.89 activities, and process activities had a mean of 0.29. CONCLUSIONS: An e-communication tool (Congredi) was usable for improving multidisciplinary communication among professionals. It even seemed to yield results for 40% of the professionals who used the e-care plan on their own. The content of the tool provided an active communication practice, with significant increases observed in the actions that must be shared for the effective coordination of care.

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. Effects on health outcomes and self-care are also explored. METHODS: In this quasi-experimental study, polypharmacy patients using five or more medications were randomly selected and invited to use their eMAR-PCTs. Participants also received two digital questionnaires assessing health and self-care (week 0 and 26). Statistical analyses were performed on two subgroups: eMAR-PCT users and non-users. RESULTS: An inclusion rate of 43.5% (n=152) was achieved. Women were more prevalent than men among the users group (56.4% vs. 43.6%). Among the eMAR-PCT users, 75% logged in more than once, and 17.9% communicated asynchronously with the pharmacist. The content of the e-mails shows that eMAR-PCT was used as intended. No improvement in the quality of the eMAR was found. The self-care variables self-efficacy (p=.006) and collaboration with the pharmacist (p=.021) showed significant improvement in the users group. CONCLUSION AND DISCUSSION: The results showed no effect on eMAR quality and a modest improvement in self-care. Active digital patient participation to improve the quality of eMAR merits further investigation as, in line with other research, tentatively positive results are shown on self-care. Possibilities for implementation are promising as half of the patients who pledged to use eMAR-PCT actually did, and used it as intended.

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. The quality and safety measures selected reflect the measures used to score Dutch hospitals as presented in Elsevier's annual 'The Best Hospitals' publication. The scores of this publication are based upon 542 of the 1516 available indicators from this basic set and safety set. Almost all indicators from the hospital-wide indicator sets are included in the selection, as are a large portion of indicators for acute care delivered by all hospitals. Of the 84 non-academic hospitals in the Netherlands, 67 (80 %) were included in this study. RESULTS: There is no statistically significant association found between a hospital's EMRAM score and their overall quality/safety performance in the Elsevier hospital scoring model. CONCLUSION: There is no evidence found to support the research hypothesis at this point in time. This outcome maybe the result of a multiplicity of factors to include the (limited) use of the methodologies used in this study, the fact that no fully digitalized hospital (EMRAM stage 7) is yet present in the NL, and/or the organizational competency of the NL hospitals in fully leveraging the EMR to facilitate patient care. Further research is needed to explore these findings.

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. They were interviewed at home using a semi-structured questionnaire. Grounded theory was used to explore the process of decision-making. In addition to the interviews, quantitative data were used from a 2-year follow-up study. RESULTS: Results underline that the placement decision had to be made in phases over time. The first decision is about placement of the relative on a waiting list, and the second decision is about the actual placement in a nursing home once a place becomes available. This second and final decision often had to be taken under time pressure to avoid a place in the nursing home being left empty. If they had been given more time and space to reconsider their admission decision, most partners said they could have had continued providing homecare longer. During the investigation, the following classification in timeliness of the admission emerged: Placement was at the right time, too early, too late or out of control. CONCLUSION: Spouses indicated they could have kept on giving care for a longer period of time if they had been given more time and space to make their final decision about the admission of their partner. It may be helpful for informal and formal carers to focus on perseverance time in considering placement or prolonged support at home. Placement at an appropriate time may lead to a higher degree of well-being of informal carers before and especially after the admission.

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. METHODS: Data were collected from 223 informal carers of dementia patients. Convergent validity was assessed by looking at associations of Pt with validated instruments for measuring subjective burden (CSI, CarerQol-7D, and SRB) and happiness (CarerQol-VAS). Content validity was evaluated by performing multivariate correlations between Pt and characteristics of dementia patients, informal carers, and care situations. The Medical Ethics Committee of Utrecht MC advised positively about the study protocol. RESULTS: Correlation coefficients between Pt and the measures of burden CSI, SRB, and CarerQol-VAS were -0.46, -0.63, and 0.23 (p < 0.01), respectively. Health of dementia patient, informal carer living apart from the patient, and male gender of caregiver were positively associated with Pt; need for supervision, intensity of informal care provision, and reductions in working hours and hobbies in order to be able to provide care were negatively associated. CONCLUSIONS: Pt is helpful in monitoring need for support and planning the transition of care from home to nursing home. This study provides a first indication of its validity, but replication is necessary.

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. OBJECTIVE: The aim of our study was to review the use and usability of patient-provider asynchronous communication for chronically ill patients and the effects of such communication on health behavior, health outcomes, and patient satisfaction. METHODS: A literature search was performed using PubMed and Embase. The quality of the articles was appraised according to the National Institute for Health and Clinical Excellence (NICE) criteria. The use and usability of the asynchronous communication was analyzed by examining the frequency of use and the number of users of the interventions with asynchronous communication, as well as of separate electronic messaging. The effectiveness of asynchronous communication was analyzed by examining effects on health behavior, health outcomes, and patient satisfaction. RESULTS: Patients' knowledge concerning their chronic condition increased and they seemed to appreciate being able to communicate asynchronously with their providers. They not only had specific questions but also wanted to communicate about feeling ill. A decrease in visits to the physician was shown in two studies (P=.07, P=.07). Increases in self-management/self-efficacy for patients with back pain, dyspnea, and heart failure were found. Positive health outcomes were shown in 12 studies, where the clinical outcomes for diabetic patients (HbA1c level) and for asthmatic patients (forced expiratory volume [FEV]) improved. Physical symptoms improved in five studies. Five studies generated a variety of positive psychosocial outcomes. CONCLUSIONS: The effect of asynchronous communication is not shown unequivocally in these studies. Patients seem to be interested in using email. Patients are willing to participate and are taking the initiative to discuss health issues with their providers. Additional testing of the effects of asynchronous communication on self-management in chronically ill patients is needed.

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 second scenario is to work with global budgets for health care providers servicing a total population. Scientists and policy makers in Europe, North America and Asia need time to design new payment systems based on the idea of global budgeting, bundled payment and shared savings.

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. The knowledge for this chapter is based on several books on pathways, which we found by searching in the digital encyclopedia Wikipedia. Although this is not usual in scientific publications, this method was used because books are not searchable by databases as Pubmed. From 2005, we performed a literature search on Pubmed and other literature databases, and with the keywords integrated care pathway, clinical pathway, critical pathway, theory, research, and evaluation. One of the inspirational sources was the website of the European Pathway Association (EPA) and its journal International Journal of Care Pathways. The authors visited several sites for this paper. These are mentioned as illustration of a concept or theory. Most of them have English websites with more information. The URLs of these websites are not mentioned in this paper as a reference, because the content of them changes fast, sometimes every day.

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. RESULTS: In the Netherlands two separate phases can be distinguished within integrated care for people with depression. From the beginning of the 1990s, specialized secondary Mental Health Care (MHC) began to develop care programmes, including programmes for people with depression. The implementation of these care programmes has taken years. Mass usage of care programmes only went ahead once the large-scale mergers between ambulatory and clinical MHC organizations around 2000 had taken effect. An analysis of these programmes shows, that they did not lead to integration with primary care. This changed in the second phase from around 2000. Then attention was directed more towards strengthening the GP within the treatment of depression, collaboration between primary and specialized care and the development of collective integrated care packages. DISCUSSION: We relate these developments to projects in other countries and discuss the scientific basis by using evidence of international literature reviews and metastudies. Some general recommendations are given about functional costing, the physical presence of MHC specialists in the primary care sector and the use of a common national standard for both primary care and specialized MHC.