scholarly journals Establishing and Boosting Communication in The European Reference Network For Rare Neurological Diseases (ERN-RND): The Impact of Offering Free Educational Webinars

2021 ◽  
Author(s):  
Alicia Brunelle-Praschberger ◽  
Annemarie E.M. Post ◽  
Sanja Hermanns ◽  
Holm Graessner
Keyword(s):  
Social Media ◽  
Healthcare Professionals ◽  
Neurological Diseases ◽  
Analytical Data ◽  
Communication Strategy ◽  
Reference Network ◽  
European Reference Network ◽  
Therapeutic Algorithms ◽  
The Impact ◽  
Tangible Product

Abstract Background: Since it first started operating in 2017, the European Reference Network for Rare Neurological Diseases (ERN-RND) implemented a multi-channel communication strategy to effectively reach its target audience: healthcare professionals, patients, researchers, industry representatives and the general public. It first created a website containing useful and up to date information followed by social media accounts. We compared the analytical data collected about the ERN-RND website and social media channels (Twitter, Facebook, YouTube) during two periods: October 2018 to September 2019 and the year after the ERN-RND free educational webinars were launched, from October 2019 to September 2020. This allowed us to quantify the impact of offering a tangible product (webinars) on the communication strategy. Results: The analytical data obtained from October 2018 to September 2019 and from October 2019 to September 2020 clearly shows a significant increase in traffic and followers since the launch of the ERN-RND webinars in November 2019. We also created a communication survey which was disseminated between February and June 2021. We collected responses from 61 people: 38 healthcare professionals, 11 scientists, 10 patients (advocates), 2 industry representatives, 1 patient association, 1 charity representative, 1 resident and 1 master student. Most respondents answered ”webinars” as the number one reason when asked about which content they look for on the ERN-RND website. Conclusions: Offering a tangible product - such as the webinars presented in this report - to a specific target group (healthcare professionals) supported our communication strategy by driving traffic to ERN-RND communication channels. It has also successfully tackled ERN-RND’s general aim: by enabling the flow of knowledge on rare neurological and movement disorders reach the medical community in hospitals treating patients with these rare and complex conditions, patients ultimately benefit from improved and faster diagnosis, care, and treatment. We aim to set up similar strategies to effectively reach other or the same target groups. For healthcare professionals, organising eConsultations via the Clinical Patient Management System (CPMS) or disseminating standards of care such as diagnostic and therapeutic algorithms as well as clinical practice guidelines might offer potential. For the patient community, organising customised and multilingual webinars could also work.

scholarly journals Research priorities for rare neurological diseases: a representative view of patient representatives and healthcare professionals from the European Reference Network for Rare Neurological Diseases

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Annemarie E. M. Post ◽  
Thomas Klockgether ◽  
G. Bernhard Landwehrmeyer ◽  
Massimo Pandolfo ◽  
Astri Arnesen ◽  
...  
Keyword(s):  
Healthcare Professionals ◽  
Neurological Diseases ◽  
Research Priorities ◽  
Reference Network ◽  
Disease Mechanisms ◽  
Research Theme ◽  
Research Themes ◽  
Patient Representatives ◽  
The Impact

Abstract Background Patient involvement in research increases the impact of research and the likelihood of adoption in clinical practice. A first step is to know which research themes are important for patients. We distributed a survey on research priorities to ERN-RND members, both patient representatives and healthcare professionals, asking them to prioritize five research themes for rare neurological diseases on a scale ranging from 1 (most important) to 5 (least important). A follow-up e-mail interview was conducted with patient representatives and professionals to assess potential reasons for differences in opinions between these two groups. Results In total, 156 responses were analysed: 61 from professionals and 95 from patient representatives. They covered all ERN-RND disease groups and came from 20 different EU countries. Almost half of the respondents considered ‘Developing therapies and preventive strategies’ the most important research theme. In particular, patient representatives prioritized this theme more often than professionals, while professionals prioritized ‘Disease mechanisms and models’. Patient representatives indicated that therapies and prevention were of the utmost importance to them, because their lives are often heavily impacted by the disease and their main goal is to relief the burden of disease. Professionals indicated that investigating disease mechanisms will lead to more knowledge and is indispensable for finding new treatments. Conclusions Patients and professionals have different opinions on which research theme should have priority. A qualitative follow-up shows that they respect each others’ view points. Different stakeholders involved in research should be aware of their differences in research theme priority. Explaining these differences to each other leads to more understanding, and could improve patient engagement in research. Graphical Abstract

scholarly journals Educational aspects of rare and orphan lung diseases

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Tiago M. Alfaro ◽  
Marlies S. Wijsenbeek ◽  
Pippa Powell ◽  
Daiana Stolz ◽  
John R. Hurst ◽  
...  
Keyword(s):  
Lung Diseases ◽  
Healthcare Professionals ◽  
Treatment Options ◽  
Delayed Diagnosis ◽  
Reference Network ◽  
Delay In Diagnosis ◽  
Positive Effects ◽  
European Reference Network ◽  
Patient Representatives ◽  
Rare Lung Diseases

AbstractPeople with rare lung diseases often suffer the burden of delayed diagnosis, limited treatment options, and difficulties in finding expert physicians. One of the reasons for the delay in diagnosis is the limited training for healthcare practitioners on rare diseases. This review explores the main concerns and needs for education on rare lung diseases from the perspectives of both patients and professionals. Despite the increasing interest in rare lung disorders and some recent breakthrough developments on the management of several diseases, healthcare professionals, including general practitioners and hospital workers, receive little education on this topic. Nonetheless, many healthcare professionals show much interest in receiving further training, especially on diagnosis. Patients and families want easier access to high-quality education materials to help them manage their own disease. Well-educated patients are better equipped to deal with chronic diseases, but patient education can be challenging as patients’ individual health issues, and diverse backgrounds can create significant barriers. Raising more awareness for rare lung diseases and further development of patient-centred international expert networks like the European Reference Network on Rare Lung Diseases (ERN-LUNG), which includes both experts and patient representatives, are essential for improving care and education on rare lung diseases. Initiatives such as the Rare Disease Day, have been successful in increasing awareness for rare conditions. The development of online tools for accessing information has had positive effects and should be further supported and extended in the future.

scholarly journals Dystonia Management: What to Expect From the Future? The Perspectives of Patients and Clinicians Within DystoniaNet Europe

2021 ◽  
Vol 12 ◽  
Author(s):  
Marenka Smit ◽  
Alberto Albanese ◽  
Monika Benson ◽  
Mark J. Edwards ◽  
Holm Graessner ◽  
...  
Keyword(s):  
Information Exchange ◽  
Wide Spectrum ◽  
Neurological Diseases ◽  
Evidence Base ◽  
Diagnostic Process ◽  
Reference Network ◽  
Novel Treatments ◽  
European Reference Network ◽  
Specialized Care ◽  
The Central Nervous System

Improved care for people with dystonia presents a number of challenges. Major gaps in knowledge exist with regard to how to optimize the diagnostic process, how to leverage discoveries in pathophysiology into biomarkers, and how to develop an evidence base for current and novel treatments. These challenges are made greater by the realization of the wide spectrum of symptoms and difficulties faced by people with dystonia, which go well-beyond motor symptoms. A network of clinicians, scientists, and patients could provide resources to facilitate information exchange at different levels, share mutual experiences, and support each other's innovative projects. In the past, collaborative initiatives have been launched, including the American Dystonia Coalition, the European Cooperation in Science and Technology (COST—which however only existed for a limited time), and the Dutch DystonieNet project. The European Reference Network on Rare Neurological Diseases includes dystonia among other rare conditions affecting the central nervous system in a dedicated stream. Currently, we aim to broaden the scope of these initiatives to a comprehensive European level by further expanding the DystoniaNet network, in close collaboration with the ERN-RND. In line with the ERN-RND, the mission of DystoniaNet Europe is to improve care and quality of life for people with dystonia by, among other endeavors, facilitating access to specialized care, overcoming the disparity in education of medical professionals, and serving as a solid platform to foster international clinical and research collaborations. In this review, both professionals within the dystonia field and patients and caregivers representing Dystonia Europe highlight important unsolved issues and promising new strategies and the role that a European network can play in activating them.

scholarly journals The impact of COVID-19 on rare metabolic patients and healthcare providers: results from two MetabERN surveys

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
C. Lampe ◽  
◽  
C. Dionisi-Vici ◽  
C. M. Bellettato ◽  
L. Paneghetti ◽  
...  
Keyword(s):  
Metabolic Diseases ◽  
Healthcare Providers ◽  
Relevant Information ◽  
European Population ◽  
Reference Network ◽  
Long Term Effects ◽  
European Reference Network ◽  
Hereditary Metabolic Diseases ◽  
Hospital To Home ◽  
The Impact

AbstractThe ongoing coronavirus disease 2019 (COVID-19) pandemic has caused disruption in all aspects of daily life, including the management and treatment of rare inherited metabolic disorders (IMDs). To perform a preliminary assessment of the incidence of COVID-19 in IMD patients and the impact of the coronavirus emergency on the rare metabolic community between March and April 2020, the European Reference Network for Hereditary Metabolic Diseases (MetabERN) has performed two surveys: one directed to patients’ organizations (PO) and one directed to healthcare providers (HCPs). The COVID-19 incidence in the population of rare metabolic patients was lower than that of the general European population (72.9 × 100,000 vs. 117 × 100,000). However, patients experienced extensive disruption of care, with the majority of appointments and treatments cancelled, reduced, or postponed. Almost all HCPs (90%) were able to substitute face-to-face visits with telemedicine, about half of patients facing treatment changes switched from hospital to home therapy, and a quarter reported difficulties in getting their medicines. During the first weeks of emergency, when patients and families lacked relevant information, most HCPs contacted their patients to provide them with support and information. Since IMD patients require constant follow-up and treatment adjustments to control their disease and avoid degradation of their condition, the results of our surveys are relevant for national health systems in order to ensure appropriate care for IMD patients. They highlight strong links in an interconnected community of HCPs and PO, who are able to work quickly and effectively together to support and protect fragile persons during crisis. However, additional studies are needed to better appreciate the actual impact of COVID-19 on IMD patients’ health and the mid- and long-term effects of the pandemic on their wellbeing.

Dangers and Benefits of Social Media on E-Professionalism of Healthcare Professionals: Rapid Evidence-Based Review (Preprint)

2020 ◽  
Author(s):  
Tea Vukusic Rukavina ◽  
Josko Viskic ◽  
Lovela Machala Poplasen ◽  
Danko Relic ◽  
Marko Marelic ◽  
...  
Keyword(s):  
Social Media ◽  
Systematic Reviews ◽  
Professional Education ◽  
Healthcare Professionals ◽  
Educational Interventions ◽  
Rapid Review ◽  
Future Research ◽  
Measurement Tool ◽  
The Impact

BACKGROUND As we are witnessing the evolution of social media (SM) use globally among the general population, popularity of SM has also been embraced by healthcare professionals. In the context of SM evolution and exponential growth of users, this rapid review summarizes recent findings about e-professionalism of healthcare professionals (HCPs). OBJECTIVE The objective of our study was to review and characterize the original peer-reviewed research studies published from November 1, 2014 to November 31,, 2018 on e-professionalism of healthcare professionals, to assess the quality of methodologies and approaches used, to explore the impact of social media on e-professionalism of healthcare professionals recognizing benefits and dangers of social media and to provide insights to guide future research in this area. METHODS A search of the literature was performed in December 2018 using 3 databases (PubMed, CINAHL and Scopus). The searches were conducted using the following defined search terms: 'professionalism’ AND 'social media' OR 'Internet' OR ‘Facebook’ OR ‘Twitter’ OR ‘Instagram’. The search strategy was limited to studies published in English. This rapid review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and the Measurement Tool to Assess Systematic Reviews guidelines. RESULTS Of the 709 retrieved papers, a total of 58 studies were finally included in this review. Overall, the quality of the studies was satisfactory. Participants in the reviewed studies were from diverse healthcare professions. Medical health professionals were involved in about three-quarters of the studies. Three key benefits of SM on e-professionalism of HCPs were identified: 1) professional networking and collaboration, 2) professional education and training and 3) effectiveness of educational interventions about e-professionalism or impact of existing SM policies. For the selected studies, there are five recognized dangers of SM on e-professionalism of HCPs: 1) loosening accountability, 2) compromising confidentiality, 3) blurred professional boundaries, 4) depiction of unprofessional behavior, and 5) legal issues. This rapid review also recognizes recommendations for changes in educational curricula regarding e-professionalism or adopting novel approaches to existing SM policies as opportunities for improvement and barriers that influence HCPs use of SM in the context of e-professionalism. CONCLUSIONS Findings in reviewed studies indicate existence of both benefits and dangers of SM on e-professionalism of HCPs. Even though there are some barriers recognized, this review has highlighted existing recommendations for including e-professionalism in educational curricula of HCPs. Based on all evidence provided, this review provided new insights and guides for future research on this area. There is a clear need for robust research to investigate new emerging SM platforms, the efficiency of guidelines and educational interventions, and the specifics of each profession regarding their SM potential and usage. CLINICALTRIAL PROSPERO CRD42019131532; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42019131532

TripAdvisor and reputation: a case study of the hotel industry in Cyprus

2017 ◽  
Vol 12 (3) ◽  
pp. 316-334 ◽  
Author(s):  
Nicholas Nicoli ◽  
Evgenia Papadopoulou
Keyword(s):  
Social Media ◽  
Hotel Industry ◽  
Communication Strategy ◽  
Reputation Management ◽  
Annual Reports ◽  
Content Type ◽  
Online Reputation ◽  
The Impact ◽  
And Training

Purpose The purpose of this paper is to examine the significance of TripAdvisor on reputation within the hotel industry. TripAdvisor encapsulates key themes in establishing an online reputation strategy in an evolving digital landscape. Design/methodology/approach Through the use of an exploratory case study, data were gathered primarily by means of a series of expert interviews within the hotel industry in Cyprus, today a mature holiday destination in Europe. Further data collection included a document search of presentations, annual reports, past surveys and sales and marketing literature from the examined industry. Findings Hotel communication practitioners are fully aware of the impact of social media in managing reputation. Constant monitoring, prompt responses, training and transparency were identified as key factors. Online reputation management needs to be taken into consideration when designing a comprehensive integrated communication strategy. Research limitations/implications Congruence amongst interviewees in certain areas could be on account of the homogeneity of practitioners, of their background and training and of similar organisational cultures across the locale of study. This leads to limits in the generalisations from this study’s findings. Practical implications Encouragement and training of employees were amongst the primary suggestions that emerged. An internal and external environmental scan, recognising possible strengths, weaknesses, opportunities and threats, which could assist in the effective engagement and monitoring of the organisation’s online presence, were also suggested. Originality/value The uniqueness of the study lies in its exploration of reputation management of a well-known traveller’s platform by addressing social media content in both a proactive and reactive manner.

Rebuilding a global brand under crisis – case of a global brand Maggi

2019 ◽  
Vol 13 (2) ◽  
pp. 118-139 ◽  
Author(s):  
Rajesh Kumar Srivastava
Keyword(s):  
Social Media ◽  
Brand Equity ◽  
Brand Image ◽  
Communication Strategy ◽  
Purchase Behavior ◽  
Primary Research ◽  
Content Type ◽  
Global Brand ◽  
Brand Crisis ◽  
The Impact

Purpose The purpose of this paper is to study whether the controversy because of brand crisis based on quality had any impact on consumer brand equity, brand image, brand reliability, brand perception of quality, perceived value, brand sentiments and purchase behavior. Design/methodology/approach The research methodology consisted of two types of data: primary and secondary data. The secondary research consisted of social media brand sentiments and financial analysis. The primary research focused on perception study of brand quality, consumer brand equity, brand reliability, brand image, purchase and brand switch behavior. Findings Maggi used social media extensively to address the issue and re-build the brand reliability and confidence among its users. Communication strategy adopted by focusing on the past experience of consumers and using them as a spokesperson generated a positive sentiment towards the brand under crisis. Research limitations/implications While Maggi suffered the backlash because of the controversy across the length and breadth of India and was banned in a number of states, the author could conduct the primary research only in one city of the state of Maharashtra, Mumbai. The effectiveness of the survey was impacted because of the geographic limitations the author faced while collecting the responses. The survey would have definitely been more effective, with responses collected from different states and with more number of respondents. Fishbein is very old, from the 1980s, even though this theory has met the test of time. Application of the effect of experiences on experiential perceptions and how this influences value through networking could have been used to explain the same. Practical implications An important implication of this paper’s findings for practice, therefore, is that brands should incessantly strive to maintain the consumers’ level of trust, as it is essential for the preservation of the brand equity after a crisis. Crisis-stricken brands should safeguard their reputations from the negative effects of crises. It is even more important for any brand to act appropriately when the cause of the crisis is attributed to its actions and processes. Managers have to address the quality of products in case of brand crisis for restoring trust, image and reliability in the brand. Right type of communication to right targeted consumers will help in the restoration of the image, trust on the brand and bring back loyal customers. Managers have to build brand equity on a regular basis, as a strong brand can recover faster as seen from this paper. Originality/value This paper helps to upgrade the knowledge and understanding of the impact of the controversy on brand equity and image and how the crisis management strategy can be adopted to regain the mind share and equity. This paper will help the brands in the future to know how a crisis can be managed efficiently by drawing a cue from the strategies implemented by Maggi.

scholarly journals Enhancement of Retail Consumer Loyalty in Latvia by Means of Social Media Communication

2020 ◽  
Vol 1 (14) ◽  
pp. 80-89
Author(s):  
Iveta Linina ◽  
Velga Vevere
Keyword(s):  
Social Media ◽  
Research Question ◽  
Online Communication ◽  
Retail Store ◽  
Communication Strategy ◽  
Consumer Loyalty ◽  
Snowball Sampling ◽  
Media Communication ◽  
Social Media Communication ◽  
The Impact

Social media communication has become an important tool both in relying information to potential consumers, as well as in creating experience sharing opportunities. The purpose of this paper is to examine the impact of’ social media communication on the loyalty formation in retailing. The tasks to be carried out are: (1) to research theoretical framework of social media communication and loyalty; (2) to work out methodology for empirical research; (3) to carry out research on consumers’ perception of retail stores online communication. Within the framework of the current study the authors employed a method of customer survey. Applying the non-probability snowball sampling method the questionnaire was distributed via e-mails and Facebook groups (n=327). The general population in this research  consisted of the economically active Latvia residents in 2020. The authors used 5-point Likert scale (1-low evaluation, 5 – very high evaluation). The SPSS program was used for this purpose, the following indicators were calculated: arithmetic mean (X ̅), Median (Me); Mode (Mo); Variation; Standard Deviation; Variation Coefficient. The research question posed in the article was the following: What role does social media play in enhancing consumer loyalty in retailing? Findings: 87% of all respondents have noticed the communication of Latvian retail store networks on social media and 60% of all respondents have chosen to follow the profile of social networks to one of them, which indicates the untapped opportunities of companies in this respect. Evaluating the communication of Latvian retail store chains, the arithmetic average is 2.68, but for communication on social media - 2.72.  It means that in order to increase these indicators, Latvian retail store chains must develop a communication strategy taking into account both the values of the target audience and the basic principles of building relationships with customers. The current research results can serve as grounds for the strategy development.

scholarly journals Journalists’ vision of the evolution of the (metaphorical) ecosystem of communication on health and biomedicine

2019 ◽  
Author(s):  
Gema Revuelta
Keyword(s):  
Social Media ◽  
Healthcare Professionals ◽  
Environmental Changes ◽  
Information Source ◽  
Working Environment ◽  
Online Information ◽  
Fake News ◽  
Structured Interviews ◽  
The Impact ◽  
Metaphorical Concept

This article analyses specialist journalists’ perception of transformations in public communication on health and biomedicine in Spain over the last two decades. A total of 20 semi-structured interviews were carried out. The analysis uses the metaphorical concept of “ecosystem”. According to the interviewees, the main “environmental” changes are technological (stressing the expansion and diversity of online information and the impact of social media). They perceive a multiplication and diversification among “information source-species”. Among these, the visibility of specialist sources (researchers and healthcare professionals) and civil associations (patients and consumers) has increased, but “opportunistic species”, such as promoters of fake news and pseudo-medicine, have also emerged. Health journalists rate their profession satisfactorily, while recognising that their working “environment” has deteriorated and perceiving a threat in the dependence on clickbait and social media positioning.

scholarly journals Preserving Professional Identities, Behaviors, and Values in Digital Professionalism: A Scoping Review

2020 ◽  
Author(s):  
Shaista Salman Guraya ◽  
Salman Yousuf Guraya ◽  
Muhammad Saiful Bahri Yusoff
Keyword(s):  
Social Media ◽  
Scoping Review ◽  
Health Professionals ◽  
Healthcare Professionals ◽  
Professional Values ◽  
Rapid Rise ◽  
Professional Identities ◽  
Digital Era ◽  
Use Of Social Media ◽  
The Impact

Abstract Background Despite a rapid rise of use of social media in medical disciplines, uncertainty prevails among healthcare professionals for providing medical content on social media. There are also growing concerns about unprofessional behaviors and blurring of professional identities that are undermining digital professionalism. This review tapped the literature to determine the impact of social media on medical professionalism and how can professional identities and values be maintained in digital era. Methods We searched the databases of PubMed, ProQuest, ScienceDirect, Web of Science, and EBSCO host using (professionalism AND (professionalism OR (professional identity) OR (professional behaviors) OR (professional values) OR (professional ethics))) AND ((social media) AND ((social media) OR (social networking sites) OR Twitter OR facebook)) AND (health professionals). The research questions were based on participants (health professionals), concept (professionalism), and context (social media, digital world). We screened initial yield of titles using pre-determined inclusion and exclusion criteria and selected a group of articles for qualitative analysis. We used the Biblioshiny® software package for generation of popular concepts as clustered keywords. Results Our search yielded 44 articles with four leading themes; marked rise in use of social media by healthcare professionals and students, negative impact of social media on digital professionalism, blurring of medical professional values, behaviors, and identity in digital era, limited evidence for teaching and assessing digital professionalism. A high occurrence of violation of patient privacy and professional integrity and cyberbullying is reported. There are no existing guidelines and policies for digital professionalism that can safeguard healthcare professionals, students and patients. Conclusion Our scoping review reports a rapid rise of unprofessional behaviors on social media among healthcare professionals. The boundaries between personal and professional practices are mystified in digital professionalism. These findings call for potential educational ramifications to resurrect professional virtues, behaviors and identities of healthcare professionals and students.

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