Understanding the ecosystem of patients with lysosomal storage diseases in Spain: a qualitative research with patients and health care professionals

Background Lysosomal Storage Diseases (LSDs) are a group of Rare Diseases (RDs) caused by lysosomal enzyme deficiencies. Patients with LSDs suffer from a wide range of symptoms with a strong impact in their daily routines. In this study we aimed to explore the impact of the disease on the lives of patients with four LSDs, as well as how they experience Patient Journey from diagnosis to follow up. Unmet Needs (UNs) perceived by patients and clinicians were assessed to have a better understanding of which initiatives could improve LSDs management and especially those that could result in an improvement of patients’ quality of life. Methods Qualitative research was the research methodology selected for the study. It provides plentiful and holistic insights into people’s views and actions. The study was conducted through in-depth face-to-face semi-structured interviews. Results In total, 20 patients and 25 Health Care Professionals (HCPs) from different Spanish regions were interviewed. Patients perceived that the highest impact of the LSDs was on their daily routines, specifically on their emotional side, their work/school environment, their family and their social life. Regarding the Patient Journey experience, the worst perceived stage was the pre-diagnosis, where patients only reported negative perceptions, being the delay in diagnosis and misdiagnosis the most commented issues. On the contrary, the follow-up stage was the one with less negative perceptions. Overall, patients and HCPs agreed on the priority UNs, such as accelerating diagnosis, reducing bureaucracy for the treatment access and a more coordinated attention for the patients, not only among different physicians but also with other professionals such as genetic counselors or social workers. Conclusions Our data shows that there are still UNs to be addressed from the perspective of patients and HCPs. The main UN is accelerating diagnosis, which could be achieved by medical awareness and education, according to clinicians. A more comprehensive disease management was another main point to be worked on to improve LSD-patient experience and quality of life.

Socio-technical Factors Impacting Patients’ Adoption of Mobile Health Tools: Systematic Literature Review (Preprint)

BACKGROUND Mobile Health (mHealth) tools have emerged as a promising healthcare technology that may contribute to cost savings, better access to care, and enhanced clinical outcomes; however, it is important to ensure their acceptance and adoption in order to harness this potential. Patient adoption has been recognized as key challenges that require further exploration. OBJECTIVE The aim of this review was to systematically investigate the literature to understand the factors impacting patients’ adoption of mHealth tools, by considering socio-technical factors (from technical, social and health perspectives). METHODS A structured search was completed following the participants, intervention, comparators, and outcomes (PICO framework. MEDLINE PubMed, the Cochrane Library, and SAGE database were searched for the studies published between January 2011 and July 2021 in the English language, yielding 5873 results, of which 147 studies met the inclusion criteria. The Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines (PRISMA) and the Cochrane handbook were followed to ensure a systematic process. RESULTS The technical factors impacting patients’ adoption of mHealth tools were categorized into 6 key themes: usefulness, ease of use, data related, monetary factors, technical issues, and user experience; which were divided into 20 sub-themes. Health related factors were categorized into 6 key themes: the disease or health condition, the care team’s role, health consciousness and literacy, health behavior, relation to other therapies, integration into patient journey, and the patients’ insurance status. Social and personal factors were split into 3 key clusters: moderating factors, personal characteristics, and social and cultural aspects; these were divided into 19 subthemes, highlighting the importance of considering these factors when addressing potential barriers to mHealth adoption and how to overcome them. CONCLUSIONS This review builds on the growing body of research that investigates patients’ adoption of mHealth services, and highlights the complexity of the factors impacting adoption, including personal, social, technical, organizational and healthcare aspects. We recommend a more patient-centered approach, by ensuring the tools’ fit into the overall patient journey and treatment plan, emphasizing inclusive design, warranting comprehensive patient education and support, empowering and mobilizing clinicians and care teams, addressing ethical data management issues, and focusing on healthcare policies that may facilitate adoption. CLINICALTRIAL NA

The Design Blueprint for a Large-Scale Telehealth Platform

Technological innovation plays a crucial role in digital healthcare services. A growing number of telehealth platforms are concentrating on using digital tools to improve the quality and availability of care. Virtual care solutions employ not only advanced telehealth technology but also a comprehensive range of healthcare services. As a result, these can reduce patient healthcare costs as well as increase accessibility and convenience. At the same time, the healthcare service provider can leverage healthcare professionals to get a better perspective into the needs of their patients. The objective of this research is to provide a comprehensive design blueprint for a large-scale telehealth platform. Telehealth is the digital healthcare service combining online services and offline access for healthcare facilities to offer various healthcare services directly to patients. This design blueprint covers the digital healthcare ecosystem, new patient journey design for digital health services, telehealth functionality design, and an outline of the platform infrastructure and security design. Ultimately, telehealth platforms establish a completed digital healthcare service and new ecosystem that provides better care for every patient worldwide.

Using communities of practice as a lens for exploring experiential pharmacy learning in general practice: Are communities of practice the way forward in changing the training culture in pharmacy?

Background Currently, there is little experiential learning in general practice (GP) during UK undergraduate and postgraduate pharmacy education and training. Aim To apply educational theories to explore pharmacy stakeholders’ perceptions of placements in general practice and contribute to the development of a model of experiential learning for pharmacy. Methods Qualitative, semi-structured interviews, conducted as part of two studies exploring experiential learning in general practice, with learners and their GP based supervisors. Interviews explored experiences of learning and practice, and what aided or hindered this. An abductive approach to analysis combined inductive coding with deductive, theory-driven interpretation using Lave and Wenger’s concept of “Communities of Practice”. Results Forty-four interviews were conducted, with learners and placement supervisors. Participants valued placements for providing authentic patient-facing learning experiences in the workplace, facilitated through legitimate peripheral participation by supervisors and supported by the use of pre- and de-briefing. Learners benefitted from support from their supervisor(s) and other staff during their day-to-day learning (informal learning), whilst also having protected time with their supervisors to discuss learning needs or go through workplace-based assessments (formal learning). Lack of clarity regarding which and how competencies should be assessed / demonstrated in general practice challenged monitoring progress from peripheral to full participation. Findings suggest that GP placements provide opportunities for learning about the patient journey between care settings; to work effectively with multidisciplinary teams; and consolidation and application of consultation / communication skills learning. Conclusions The learning culture of GP supports learners’ development, providing time and opportunities for meaningful and authentic workplace learning, with healthcare professionals acting as supervisors and mentors. These findings can usefully inform implementation of meaningful learning opportunities in primary and secondary care for those involved in pharmacy education and training.

How To Hospital: barriers to developing a patient ‘Hospital Survival Guide’ to support information transfer during ward-rounds on the patient journey from admission to hospital to discharge

Clinicians can enable patients to actively participate in their care but communication with patients is often poor and highly variable. The aim of this study was to explore patients’ understanding of their current illness while in hospital and using a codesign process to create prototype tools to facilitate better communication during ward rounds.A mixed-methods, multistep design with step 1: Application of a questionnaire addressing domains of care in the acute medical unit; step 2: Development of communication aids that were codesigned with active help of patients, students and a specialist in user centric design to address patient needs and step 3: Evaluation of tools with patients in four Plan–Do–Study–Act cycles.In the initial survey of 30 patients 12 (40%) patients did not know what their diagnosis was and 5 (17%) did not know the results of recent key tests. 20 (67%) patients felt that staff communication and coordination could be improved.An intervention was prototyped with four variations: (1) An A6 ward-round summary sheet completed by doctors during ward rounds. The system worked well but was highly person dependent. (2) An A4 patient-owned diary (‘How to Hospital’) that contained information about key processes in hospital and space to document conversations from rounds and prompts for questions. 10 patients read the diary and commented favourably but did not complete any pages. (3) ‘Diary-cards’: a basic set of information cards was given to patients on admission to hospital. (4) Patient specific ‘diary-cards’ were completed by clinicians—10 forms were piloted during rounds and improved subsequent day information retention of diagnosis to 80%.Our study identified interventions that were feasible but remained person-dependent. The patients’ ownership of information in relation to their care might facilitate retention and satisfaction but the optimal format for these interventions for enhancing communication remains unclear.

Update sul management e trattamento del paziente con lesioni cutanee croniche

Le lesioni da decubito, le ulcere vascolari e il piede diabetico rappresentano le lesioni cutanee croniche maggiormente diffuse in età geriatrica. La lesione cutanea cronica presenta un elevato rischio infettivo ed un management complesso che richiede terapie mirate ed un iter di trattamento specifico. Il metodo TIME (Tissue management control of Infection and inflammation Moisture imbalance advancement of the Epithelial edge of the wound), costituisce il gold standard per il trattamento delle lesioni cutanee croniche poiché consente di controllare l’infezione e il grado di macerazione della ferita anche nei margini epiteliali. La soluzione di ipoclorito di sodio alla concentrazione dello 0,05%, oggetto di numerosi studi in letteratura, grazie ad un ampio spettro germicida ed alla sua elevata compatibilità tissutale rappresenta il metodo di disinfezione d’elezione per il trattamento delle lesioni cutanee croniche. La qualità di vita (Quality of Life, QoL) di un paziente affetto da lesione cutanea cronica può essere fortemente compromessa. La formazione di un team sanitario multidisciplinare per la gestione del patient journey può favorire il percorso di guarigione, facilitare la gestione della lesione nella quotidianità e migliorare la QoL del paziente. La telemedicina spicca tra le modalità innovative di gestione del wound care sperimentate da un’equipe di specialisti del territorio ligure negli ultimi mesi a seguito della pandemia COVID-19. La pratica della telemedicina si è rivelata particolarmente utile nel follow up della lesione cronica a fronte di un adeguato impiego di strumenti tecnologici che permettano un’elevata qualità di immagini.

The Role of the Biotechnology Industry in Addressing Health Inequities in Africa: Strengthening the Entire Health Care Value Chain

There are many misconceptions surrounding health care in Africa, a continent of 54 sovereign countries and a population exceeding 1.2 billion souls which is growing at the fastest rate in the world. Enormous diversity has direct impact on the notion, practices, and availability of health care on the continent. There are no satisfactory generalizations about the state of health and the strength of health care systems for the continent as a whole. Indeed, differences between neighboring countries are enormous, as well as among population groups within countries. There is a significant mix of public, private, and faith-based health care providers. In most African countries, 60 percent of health providers fall into the latter two categories (IFC, 2008). Moreover, movements towards national and private risk pooling for payment of health care are underway in only a few countries, but virtually all modern African constitutions declare health care as a human right and aspire to some form of Universal Health Coverage (UHC). Despite these principles, Africans endure a dual burden of communicable and non-communicable disease. In the face of these challenges, Africans are confronted with out-of-pocket payment for health services – when it is available at all – and challenging logistics for accessing and maintaining consistency of care. The patient journey for Africans is a winding path, often exacerbated by an additional reliance on the importation of talent, pharmaceuticals and vaccines, medical and diagnostic tools, and digital support of the health systems. The health care value chain in Africa is incomplete. Each of Providers, Payers and Producers need further development. When any of these is weak or missing, there cannot be a sustainable health system. The issue, therefore, is not scientific or clinical competence; it is capacity and the necessity to promote a comprehensive and integrated health care ecosystem – including the Producer segment. To address the Producer link, more direct engagement by the global biopharmaceutical industry in assisting and investing in the advancement of indigenous laboratory and clinical development, product production and distribution, and the advancement of human capital necessary to achieve health care sovereignty for the continent is necessary. There is all the more reason to do so as humanity enters the age of genomic and precision medicine. There is a pathway for African health care to leapfrog as it has done in telecommunications.