Background: Within the generalist-plus-specialist palliative care model, palliative care is mainly provided by nurses and physicians of hospital primary care teams. Palliative care consultation... Show moreBackground: Within the generalist-plus-specialist palliative care model, palliative care is mainly provided by nurses and physicians of hospital primary care teams. Palliative care consultation teams (PCCTs) support these clinicians in adequately caring for patients with advanced illnesses. Our team started in 2012. The aim of this study was to assess the self-perceived barriers, educational needs and awareness of available palliative care support options among our hospital primary care teams. In addition, palliative care referral patterns were evaluated.Methods: Single-center mixed methods study. Outcomes of two surveys of primary care team clinicians (2012 and 2016) on barriers to palliative care, educational needs and awareness of palliative care support options were compared ( chi-square, Mann-Whitney U tests, qualitative analysis). Palliative care referral characteristics were evaluated [2012- 2017], including referral timing (survival since referral) (descriptive statistics, Kaplan-Meier methodology). Predictions of survival at referral were analyzed (weighted Kappa).Results: In 2012 and 2016, the most frequently reported barrier was the late initiation of the palliative care approach. Clinicians reported a need for education on physical symptom management and basic palliative care principles. Awareness of support options increased from 2012 to 2016, including improved familiarity with the PCCT (56% vs. 85%, P<0.001) and positive appraisal of the team (8% vs. 40% gave an 'excellent' rating, P<0.001). The use of national symptom management guidelines also improved (23% vs. 53%, P<0.001). Of 1,404 referrals, 86% were for cancer patients. Referrals increased by 28% (mean) per year. Medical oncology clinicians referred most frequently (27%) and increasingly early in the disease trajectory (survival >= 3 months after referral) (P=0.016). Median survival after referral was 0.9 (range, 0-83.3) months. Referring physicians overestimated survival in 44% of patients (kappa 0.36, 95% CI: 0.30-0.42).Conclusions: Primary care team clinicians persistently reported needing support with basic palliative care skills. PCCTs should continuously focus on educating primary care teams and promoting the use of guidelines. Because physicians tend to overestimate survival and usually referred patients late for specialist palliative care, consultation teams should support primary care teams to identify, treat and refer patients with palliative care needs in a timely manner. Show less
Contemporary governance is increasingly characterized by the consultation of different types of stakeholders, such as interest groups representing economic and citizen interests, as well as public... Show moreContemporary governance is increasingly characterized by the consultation of different types of stakeholders, such as interest groups representing economic and citizen interests, as well as public and private institutions, such as public authorities and firms. Previous research has demonstrated that public officials use a variety of tools to involve these actors in policymaking. Yet, we have limited knowledge on how particular consultation approaches relate to stakeholder participation. To what extent do open, closed and hybrid consultation approaches, with the first two, respectively, referring to the use of public and targeted tools, and the third one implying a combination of both of them, relate to the policy engagement of a different set of stakeholders? In this paper, we identify the different tools used by the European Commission to engage stakeholders in policymaking and assess how variation in consultation approaches relates to stakeholder participation via a descriptive and multivariate analysis. We rely on two datasets: a regulatory database that contains detailed information on 41 EU regulations and a stakeholder database that comprises 2617 stakeholders that were involved in these regulations through different consultation tools. Our main finding is that implementing different consultation approaches affects stakeholder diversity. Specifically, closed consultation approaches lead to a lower level of business dominance than hybrid approaches that combine open and targeted consultation tools. Show less
Kuipers, E.; Wensing, M.; Smet, P.A.G.M. de; Teichert, M. 2020
Background: Treatment of obstructive lung disease with inhalation therapy needs changes in patient behavior. Shortly after the start with inhaled corticosteroids (ICS) maintenance therapy, patients... Show moreBackground: Treatment of obstructive lung disease with inhalation therapy needs changes in patient behavior. Shortly after the start with inhaled corticosteroids (ICS) maintenance therapy, patients might be in need of additional pharmaceutical care, tailored to their individual needs. This study aimed to provide insight into patient behavior, goals and perceptions regarding their medical treatment at start with ICS therapy, by telephone interviews with ICS starters. Besides, this study investigated pharmacists' and patients' experiences with these interviews and opinions on the utility of this type of consultation for daily practice.Methods: Semi-structured telephone interviews were conducted by pharmacists with adult patients 2-3 weeks after starting ICS. The Theoretical Domain Framework (TDF) was used for data analysis and coding. Afterward, the patients and pharmacists were questioned about their experiences with the interview.Results: Five pharmacists conducted interviews with 23 ICS starters. Except the domains "environmental context and resources", "optimism", and "reinforcement", the remaining 11 domains in the TDF were addressed in the interviews. The majority of patients defined personal goals, which mainly addressed disease or symptom control (clinical goals). Some patients showed a lack of knowledge regarding the clinical indication or therapy duration. Views on beneficial medication effects differed between patients. Some patients specifically mentioned concerns or anxiety about side effects. The interviewees described different perceptions on the necessity of a personalized routine for regular medication use. Patients and pharmacists both felt positive about an added value of these interviews for daily practice.Conclusion: Patient interviews shortly after start with ICS therapy revealed various perceptions and beliefs that might influence medication use and achievement of individual treatment goals. The patients appreciated the opportunity to ask questions and share their perspectives and needs with their pharmacist, and the pharmacists experienced that the interviews had added value. Show less
Data driven technologies and the internet provide the tools to target content, products and services to different individuals at massive scale and relatively low cost in highly sophisticated ways,... Show moreData driven technologies and the internet provide the tools to target content, products and services to different individuals at massive scale and relatively low cost in highly sophisticated ways, monitor outcomes and iterate and improve on targeting approaches in real-time. These tools - and the breadth and depth of data commonly held about people and their online behaviours - distinguish online targeting from the relatively broader kind of targeting of populations that has been used for years. The purpose of the review was to analyse the use of online targeting approaches and to make practical recommendations to the UK Government, industry and civil society for how online targeting can be conducted and governed in a way that facilitates the benefits and minimises the risks it presents. Ther definition of online targeting centres around the customisation of products and services online (including content, services standards and prices) based on data about individual users. Instances of online targeting includes online advertising and personalised social media feeds and recommendations. Show less
In this contribution, we will illustrate the modern-day dynamics of the interplay between the need for expedience and efficiency on the one hand, and the demand for openness, inclusiveness and... Show moreIn this contribution, we will illustrate the modern-day dynamics of the interplay between the need for expedience and efficiency on the one hand, and the demand for openness, inclusiveness and transparency on the other by looking into one of government’s main decision-making processes: the legislative process. Particularly in the field of legislation, the balancing of both efficiency and transparency is of the essence for modern legislatures in parliamentary democracies: laws expressed by acts and legislative instruments can only be truly effective if they rest on broad societal support. As we will argue, a transparent and inclusive legislative process functions as a kind of democratic check on government action: it guarantees sufficient deliberative activity before a government may act. Throughout our contribution, a 2012 comparative study commissioned by the Dutch Ministry of Security and Justice, and carried out by an interdisciplinary team of researchers from Leiden University will be used as a guiding rail to illustrate some the ways in which different jurisdictions in Europe have managed to combine, or at least balance, the need for legislative efficiency and transparency. We will use this study to demonstrate how traditional legislative processes nowadays grapple to translate the will of the citizens into effective legislation, how modern administrations still need democratically underpinned legislative procedures as the basis for the legitimation of (their) decisions, how efficient delivery of decisions and careful (lengthy) scrutiny interact. On the basis of this material we will further discuss concepts of, respectively, efficiency and transparency and especially the way modern legislatures examined in the study use information and communication technology (ICT) to overcome the sometimes opposing demands on their legislative processes. Insofar as possible we will try to highlight a few ‘best practices’ that show how legislative processes can (and cannot) adapt to new present day demands. Show less
