Search results for: healthcare informatics
Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 1684

Search results for: healthcare informatics

934 Detailed Feasibility and Design of a Grid-Tied PV and Building Integrated Photovoltaic System for a Commercial Healthcare Building

Authors: Muhammad Ali Tariq

Abstract:

Grid-connected PV systems have drawn tremendous attention of researchers in the past recent years. The report elucidates the development of efficient and stable solar PV energy conversion systems after thorough analysis at various facets like PV module characteristics, its arrangement, power electronics and MPPT topologies, the stability of the grid, and economic viability over its lifetime. This report and feasibility study will try to bring all optimizing approaches and design calculations which are required for generating energy from BIPV and roof-mounted solar PV in a convenient, sustainable, and user-friendly way.

Keywords: building integrated photovoltaic system, grid integration, solar resource assessment, return on investment, multi MPPT-inverter, levelised cost of electricity

Procedia PDF Downloads 139
933 Telepsychiatry for Asian Americans

Authors: Jami Wang, Brian Kao, Davin Agustines

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COVID-19 highlighted the active discrimination against the Asian American population easily seen through media, social tension, and increased crimes against the specific population. It is well known that long-term racism can also have a large impact on both emotional and psychological well-being. However, the healthcare disparity during this time also revealed how the Asian American community lacked the research data, political support, and medical infrastructure for this particular population. During a time when Asian American fear for safety with decreasing mental health, telepsychiatry is particularly promising. COVID-19 demonstrated how well psychiatry could integrate with telemedicine, with psychiatry being the second most utilized telemedicine visits. However, the Asian American community did not utilize the telepsychiatry resources as much as other groups. Because of this, we wanted to understand why the patient population who was affected the most by COVID-19 mentally did not seek out care. To do this, we decided to study the top top telepsychiatry platforms. The current top telepsychiatry companies in the United States include Teladoc and BetterHelp. In the Teladoc mental health sector, they only had 4 available languages (English, Spanish, French, and Danis,) with none of them being an Asian language. In a similar manner, Teladoc’s top competitor in the telepsychiatry space, BetterHelp, only listed a total of 3 Asian languages, including Mandarin, Japanese, and Malaysian. However, this is still a short list considering they have over 20 languages available. The shortage of available physicians that speak multiple languages is concerning, as it could be difficult for the Asian American community to relate with. There are limited mental health resources that cater to their likely cultural needs, further exacerbating the structural racism and institutional barriers to appropriate care. It is important to note that these companies do provide interpreters to comply with the nondiscrimination and language assistance federal law. However, interactions with an interpreter are not only more time-consuming but also less personal than talking directly with a physician. Psychiatry is the field that emphasizes interpersonal relationships. The trust between a physician and the patient is critical in developing patient rapport to guide in better understanding the clinical picture and treating the patient appropriately. The language barrier creates an additional barrier between the physician and patient. Because Asian Americans are one of the largest growing patient population bases, these telehealth companies have much to gain by catering to the Asian American market. Without providing adequate access to bilingual and bicultural physicians, the current system will only further exacerbate the growing disparity. The healthcare community and telehealth companies need to recognize that the Asian American population is a severely underserved population in mental health and has much to gain from telepsychiatry. The lack of language is one of many reasons why there is a disparity for Asian Americans in the mental health space.

Keywords: telemedicine, psychiatry, Asian American, disparity

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932 Benefits of Tele ICU in Remote Parts of India: A Study

Authors: Rajendra Raval

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Tele ICU services leverage advanced telecommunication technologies to enhance intensive care unit (ICU) capabilities. By integrating real-time remote monitoring, diagnostic tools, and expert consultations, these services provide continuous, high-quality care to critically ill patients. Healthcare professionals can access patient data, view live video feeds, and collaborate with on-site ICU teams, regardless of their physical location. This model improves patient outcomes through timely interventions, optimizes resource utilization, and extends the reach of specialized care to underserved or remote areas. The implementation of Tele ICU services represents a significant advancement in critical care, bridging gaps in accessibility and ensuring a consistent standard of care across various settings.

Keywords: optimised human resource, remote areas, tele-ICU, telemedicine

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931 Case Report: Complex Regional Pain Syndrome

Authors: Farah Al Zaabi, Sarah Amrani

Abstract:

Complex regional pain syndrome (CRPS) is a chronic pain condition that develops in an extremity following a fracture, soft tissue injury, or surgery. It is a neuropathic pain disorder that is accompanied by the characteristic skin manifestations that are needed for the diagnosis. We report the case of a 30 year old male, who has findings consistent with CRPS and has been followed for over two years by multiple specialties within the healthcare system without obtaining a diagnosis. The symptoms he presented with were treated based on the specialty he was seeing, rather than unified and recognized as a single disease process. Our case highlights the complexity of chronic pain, which can sometimes present with skin manifestations, and the importance of involving a pain specialist early for both the medical and physical recovery of CRPS patients.

Keywords: complex regional pain syndrome, chronic pain, skin changes of CRPS, dermatological manifestions of CRPS

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930 Providing Health Promotion Information by Digital Animation to International Visitors in Japan: A Factorial Design View of Nurses

Authors: Mariko Nishikawa, Masaaki Yamanaka, Ayami Kondo

Abstract:

Background: International visitors to Japan are at a risk of travel-related illnesses or injury that could result in hospitalization in a country where the language and customs are unique. Over twelve million international visitors came to Japan in 2015, and more are expected leading up to the Tokyo Olympics. One aspect of this is the potentially greater demand on healthcare services by foreign visitors. Nurses who take care of them have anxieties and concerns of their knowledge of the Japanese health system. Objectives: An effective distribution of travel-health information is vital for facilitating care for international visitors. Our research investigates whether a four-minute digital animation (Mari Info Japan), designed and developed by the authors and applied to a survey of 513 nurses who take care of foreigners daily, could clarify travel health procedures, reduce anxieties, while making it enjoyable to learn. Methodology: Respondents to a survey were divided into two groups. The intervention group watched Mari Info Japan. The control group read a standard guidebook. The participants were requested to fill a two-page questionnaire called Mari Meter-X, STAI-Y in English and mark a face scale, before and after the interventions. The questions dealt with knowledge of health promotion, the Japanese healthcare system, cultural concerns, anxieties, and attitudes in Japan. Data were collected from an intervention group (n=83) and control group (n=83) of nurses in a hospital, Japan for foreigners from February to March, 2016. We analyzed the data using Text Mining Studio for open-ended questions and JMP for statistical significance. Results: We found that the intervention group displayed more confidence and less anxiety to take care of foreign patients compared to the control group. The intervention group indicated a greater comfort after watching the animation. However, both groups were most likely to be concerned about language, the cost of medical expenses, informed consent, and choice of hospital. Conclusions: From the viewpoint of nurses, the provision of travel-health information by digital animation to international visitors to Japan was more effective than traditional methods as it helped them be better prepared to treat travel-related diseases and injury among international visitors. This study was registered number UMIN000020867. Funding: Grant–in-Aid for Challenging Exploratory Research 2010-2012 & 2014-16, Japanese Government.

Keywords: digital animation, health promotion, international visitor, Japan, nurse

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929 Reduction in Hospital Acquire Infections after Intervention of Hand Hygiene and Personal Protective Equipment at COVID Unit Indus Hospital Karachi

Authors: Aisha Maroof

Abstract:

Introduction: Coronavirus Disease 2019 (COVID-19) is spreading rapidly around the world with devastating consequences on patients, health care workers and health systems. Severe 2019 novel coronavirus infectious disease (COVID-19) with pneumonia is associated with high rates of admission to the intensive care unit (ICU) and they are at high risk to obtain the hospital acquire bloodstream infection (HAIs) such as central line associated bloodstream infection (CLABSI), catheter associated urinary tract infections (CAUTI) and laboratory confirm bloodstream infection (LCBSI). The chances of infection transmission increase when healthcare worker’s (HCWs) practice is inappropriate. Risk related to hand hygiene (HH) and personal protective equipment (PPE) as regards multidrug-resistant organism transmission: use of multiple gloving instead of HH and incorrect use of PPE can lead to a significant increase of device-related infections. As it reaches low- and middle-income countries, its effects could be even more, because it will be difficult for them to react aggressively to the pandemic. HAIs are one of the biggest medical concerns, resulting in increased mortality rates. Objective: To assess the effect of intervention on compliance of hand hygiene and PPE among HCWs reduce the rate of HAI in COVID-19 patients. Method: An interventional study was done between July to December, 2020. CLABSI, CAUTI and LCBSI data were collected from the medical record and direct observation. There were total of 50 Nurses, 18 doctors and all patients with laboratory-confirmed severe COVID-19 admitted to the hospital were included in this research study. Respiratory tract specimens were obtained after the first 48 h of ICU admission. Practices were observed after and before intervention. Education was provided based on WHO guidelines. Results: During the six months of study July to December, the rate of CLABSI, CAUTI and LCBSI pre and post intervention was reported. CLABSI rate decreasedd from 22.7 to 0, CAUTI rate was decreased from 1.6 to 0, LCBSI declined from 3.3 to 0 after implementation of intervention. Conclusion: HAIs are an important cause of morbidity and mortality. Most of the device related infections occurs due to lack of correct use of PPE and hand hygiene compliance. Hand hygiene and PPE is the most important measure to protect patients, through education it can be improved the correct use of PPE and hand hygiene compliance and can reduce the bacterial infection in COVID-19 patients.

Keywords: hospital acquire infection, healthcare workers, hand hygiene, personal protective equipment

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928 An Exploration of Health Promotion Approach to Increase Optimal Complementary Feeding among Pastoral Mothers Having Children between 6 and 23 Months in Dikhil, Djibouti

Authors: Haruka Ando

Abstract:

Undernutrition of children is a critical issue, especially for people in the remote areas of the Republic of Djibouti, since household food insecurity, inadequate child caring and feeding, unhealthy environment and lack of clean water, as well as insufficient maternal and child healthcare, are underlying causes which affect. Nomadic pastoralists living in the Dikhil region (Dikhil) are socio-economically and geographically more vulnerable due to displacement, which in turn worsens the situation of child stunting. A high prevalence of inappropriate complementary feeding among pastoral mothers might be a significant barrier to child growth. This study aims to identify health promotion intervention strategies that would support an increase in optimal complementary feeding among pastoral mothers of children aged 6-23 months in Dikhil. There are four objectives; to explore and to understand the existing practice of complementary feeding among pastoral mothers in Dikhil; to identify the barriers in appropriate complementary feeding among the mothers; to critically explore and analyse the strategies for an increase in complementary feeding among the mothers; to make pragmatic recommendations to address the barriers in Djibouti. This is an in-depth study utilizing a conceptual framework, the behaviour change wheel, to analyse the determinants of complementary feeding and categorize health promotion interventions for increasing optimal complementary feeding among pastoral mothers living in Dikhil. The analytical tool was utilized to appraise the strategies to mitigate the selected barriers against optimal complementary feeding. The data sources were secondary literature from both published and unpublished sources. The literature was systematically collected. The findings of the determinants including the barriers of optimal complementary feeding were identified: heavy household workload, caring for multiple children under five, lack of education, cultural norms and traditional eating habits, lack of husbands' support, poverty and food insecurity, lack of clean water, low media coverage, insufficient health services on complementary feeding, fear, poor personal hygiene, and mothers' low decision-making ability and lack of motivation for food choice. To mitigate selected barriers of optimal complementary feeding, four intervention strategies based on interpersonal communication at the community-level were chosen: scaling up mothers' support groups, nutrition education, grandmother-inclusive approach, and training for complementary feeding counseling. The strategies were appraised through the criteria of effectiveness and feasibility. Scaling up mothers' support groups could be the best approach. Mid-term and long-term recommendations are suggested based on the situation analysis and appraisal of intervention strategies. Mid-term recommendations include complementary feeding promotion interventions are integrated into the healthcare service providing system in Dikhil, and donor agencies advocate and lobby the Ministry of Health Djibouti (MoHD) to increase budgetary allocation on complementary feeding promotion to implement interventions at a community level. Moreover, the recommendations include a community health management team in Dikhil training healthcare workers and mother support groups by using complementary feeding communication guidelines and monitors behaviour change of pastoral mothers and health outcome of their children. Long-term recommendations are the MoHD develops complementary feeding guidelines to cover sector-wide collaboration for multi-sectoral related barriers.

Keywords: Afar, child food, child nutrition, complementary feeding, complementary food, developing countries, Djibouti, East Africa, hard-to-reach areas, Horn of Africa, nomad, pastoral, rural area, Somali, Sub-Saharan Africa

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927 Reducing Falls in Memory Care through Implementation of the Stopping Elderly Accidents, Deaths, and Injuries Program

Authors: Cory B. Lord

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Falls among the elderly population has become an area of concern in healthcare today. The negative impacts of falls lead to increased morbidity, mortality, and financial burdens for both patients and healthcare systems. Falls in the United States is reported at an annual rate of 36 million in those aged 65 and older. Each year, one out of four people in this age group will suffer a fall, with 20% of these falls causing injury. The setting for this Doctor of Nursing Practice (DNP) project was a memory care unit in an assisted living community, as these facilities house cognitively impaired older adults. These communities lack fall prevention programs; therefore, the need exists to add to the body of knowledge to positively impact this population. The objective of this project was to reduce fall rates through the implementation of the Center for Disease Control and Prevention (CDC) STEADI (stopping elderly accidents, deaths, and injuries) program. The DNP project performed was a quality improvement pilot study with a pre and post-test design. This program was implemented in the memory care setting over 12 weeks. The project included an educational session for staff and a fall risk assessment with appropriate resident referrals. The three aims of the DNP project were to reduce fall rates among the elderly aged 65 and older who reside in the memory care unit, increase staff knowledge of STEADI fall prevention measures after an educational session, and assess the willingness of memory care unit staff to adopt an evidence-based a fall prevention program. The Donabedian model was used as a guiding conceptual framework for this quality improvement pilot study. The fall rate data for 12 months before the intervention was evaluated and compared to post-intervention fall rates. The educational session comprised of a pre and post-test to assess staff knowledge of the fall prevention program and the willingness of staff to adopt the fall prevention program. The overarching goal was to reduce falls in the elderly population who live in memory care units. The results of the study showed, on average that the fall rate during the implementation period of STEADI (μ=6.79) was significantly lower when compared to the prior 12 months (μ= 9.50) (p=0.02, α = 0.05). The mean staff knowledge scores improved from pretest (μ=77.74%) to post-test (μ=87.42%) (p=0.00, α= 0.05) after the education session. The results of the willingness to adopt a fall prevention program were scored at 100%. In summation, implementing the STEADI fall prevention program can assist in reducing fall rates for residents aged 65 and older who reside in a memory care setting.

Keywords: dementia, elderly, falls, STEADI

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926 Factors Affecting General Practitioners’ Transfer of Specialized Self-Care Knowledge to Patients

Authors: Weidong Xia, Malgorzata Kolotylo, Xuan Tan

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This study examines the key factors that influence general practitioners’ learning and transfer of specialized arthritis knowledge and self-care techniques to patients during normal patient visits. Drawing on the theory of planed behavior and using matched survey data collected from general practitioners before and after training sessions provided by specialized orthopedic physicians, the study suggests that the general practitioner’s intention to use and transfer learned knowledge was influenced mainly by intrinsic motivation, organizational learning culture and absorptive capacity, but was not influenced by extrinsic motivation. The results provide both theoretical and practical implications.

Keywords: empirical study, healthcare knowledge management, patient self-care, physician knowledge transfer

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925 Obstruction to Treatments Meeting International Standards for Lyme and Relapsing Fever Borreliosis Patients

Authors: J. Luché-Thayer, C. Perronne, C. Meseko

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We reviewed how certain institutional policies and practices, as well as questionable research, are creating obstacles to care and informed consent for Lyme and relapsing fever Borreliosis patients. The interference is denying access to treatments that meet the internationally accepted standards as set by the Institute of Medicine. This obstruction to care contributes to significant human suffering, disability and negative economic effect across many nations and in many regions of the world. We note how evidence based medicine emphasizes the importance of clinical experience and patient-centered care and how these patients benefit significantly when their rights to choose among treatment options are upheld.  

Keywords: conflicts of interest, obstacles to healthcare accessibility, patient-centered care, the right to informed consent

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924 A Development of Community Participation in Developing Healthy Religion Places in Narathiwat Province, Thailand

Authors: Waepa Wanhussen

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The Ministry of Public Health has established policies accelerating health promotion to prevent public health problems in five border provinces of Thailand. One of these policies employs the religion to guide the community development and solve health issues consistent with the lifestyle and culture of those people. This policy is an important strategy to solve the problems due to the unrest and conflicts in the southern border provinces. This participatory action research aimed to develop mosques as healthy religion places in Narathiwat Province. In the development, the participatory action, consisting of 5 stages, was conducted from October 2012 - May 2013. Stage I: Conducting a survey for problems and needs for developing healthy religion places by employing community participation. Stage II: Analyzing problems and situations at a workshop containing informal interviews and group conversations with 200 participants (health providers at district level, Imams (the Muslim leaders), and community leaders). Stage III: Planning for developing healthy religion places by health providers, Imams, community leaders. Stage IV: Implementing the plan according to the conditions of problems and needs of the community in order to develop healthy religion places. Stage V: Evaluating the implementation by using the instrument, a criteria of being healthy religion place, for collecting data. Data were analyzed by using percentage. It was found that out of 630 mosques 575 (90.12%) passed the criteria of being a healthy religion place. Among these mosques, 190 mosques (30.15%) were in good and very good level, in which, after the implementation, the number of being good and very good healthy mosques increased by 22.58%. The researcher suggested that the developing sustainably healthy religion places require the participation of residences in the community and agencies such as local government, the Islamic Council of Narathiwat Province, and Council of Culture of Narathiwat Province. The healthy religion places can be used to strengthen and sustain health promotion and disease prevention in the community as health learning centers.

Keywords: healthy religion places, development of community participation, nursing informatics, health

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923 Development a Home-Hotel-Hospital-School Community-Based Palliative Care Model for Patients with Cancer in Suratthani, Thailand

Authors: Patcharaporn Sakulpong, Wiriya Phokhwang

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Background: Banpunrug (Love Sharing House) established in 2013 provides a community-based palliative care for patients with cancer from 7 provinces in southern Thailand. These patients come to receive outpatient chemotherapy and radiotherapy at Suratthani Cancer Hospital. They are poor and uneducated; they need an accommodation during their 30-45 day course of therapy. Methods: A community-participatory action research (PAR) was employed to establish a model of palliative care for patients with cancer. The participants included health care providers, community, and patients and families. The PAR process includes problem identification and need assessment, community and team establishment, field survey, organization founding, model of care planning, action and inquiry (PDCA), outcome evaluation, and model distribution. Results: The model of care at Banpunrug involves the concepts of HHHS model, in that Banpunrug is a Home for patients; patients live in a house comfortable like in a Hotel resource; the patients are given care and living facilities similarly to those in a Hospital; the house is a School for patients to learn how to take care themselves, how to live well with cancer, and most importantly how to prepare themselves for a good death. The house is also a humanized care school for health care providers. Banpunrug’s philosophy of care is based on friendship therapy, social and spiritual support, community partnership, patient-family centeredness, Live & Love sharing house, and holistic and humanized care. With this philosophy, the house is managed as a home of the patients and everyone involved; everything is costless for all eligible patients and their family members; all facilities and living expense are donated from benevolent people, friends, and community. Everyone, including patients and family, has a sense of belonging to the house and there is no authority between health care providers and the patients in the house. The house is situated in a temple and a community and supported by many local nonprofit organizations and healthcare facilities such as a health promotion hospital at sub-disctrict level and Suratthani Cancer Hospital. Village health volunteers and multi-professional health care volunteers have contributed not only appropriate care, but also knowledge and experience to develop a distinguishing HHHS community-based palliative care model for patients with cancer. Since its opening the house has been a home for more than 400 patients and 300 family members. It is also a model for many national and international healthcare organizations and providers, who come to visit and learn about palliative care in and by community. Conclusions: The success of this palliative care model comes from community involvement, multi-professional volunteers and distributions, and concepts of HHHS model. Banpunrug promotes a consistent care across the cancer trajectory independent of prognosis in order to strengthen a full integration of palliative

Keywords: community-based palliative care, model, participatory action research, patients with cancer

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922 Analysis of Business Intelligence Tools in Healthcare

Authors: Avishkar Gawade, Omkar Bansode, Ketan Bhambure, Bhargav Deore

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In recent year wide range of business intelligence technology have been applied to different area in order to support decision making process BI enables extraction of knowledge from data store. BI tools usually used in public health field for financial and administrative purposes.BI uses a dashboard in presentation stage to deliver information to information to end users.In this paper,we intend to analyze some open source BI tools on the market and their applicability in the clinical sphere taking into consideration the general characteristics of the clinical environment.A pervasive BI platform was developed using a real case in order to prove the tool viability.Analysis of various BI Tools in done with the help of several parameters such as data security,data integration,data quality reporting and anlaytics,performance,scalability and cost effectivesness.

Keywords: CDSS, EHR, business intelliegence, tools

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921 Evidence-Triggers for Care of Patients with Cleft Lip and Palate in Srinagarind Hospital: The Tawanchai Center and Out-Patients Surgical Room

Authors: Suteera Pradubwong, Pattama Surit, Sumalee Pongpagatip, Tharinee Pethchara, Bowornsilp Chowchuen

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Background: Cleft lip and palate (CLP) is a congenital anomaly of the lip and palate that is caused by several factors. It was found in approximately one per 500 to 550 live births depending on nationality and socioeconomic status. The Tawanchai Center and out-patients surgical room of Srinagarind Hospital are responsible for providing care to patients with CLP (starting from birth to adolescent) and their caregivers. From the observations and interviews with nurses working in these units, they reported that both patients and their caregivers confronted many problems which affected their physical and mental health. Based on the Soukup’s model (2000), the researchers used evidence triggers from clinical practice (practice triggers) and related literature (knowledge triggers) to investigate the problems. Objective: The purpose of this study was to investigate the problems of care for patients with CLP in the Tawanchai Center and out-patient surgical room of Srinagarind Hospital. Material and Method: The descriptive method was used in this study. For practice triggers, the researchers obtained the data from medical records of ten patients with CLP and from interviewing two patients with CLP, eight caregivers, two nurses, and two assistant workers. Instruments for the interview consisted of a demographic data form and a semi-structured questionnaire. For knowledge triggers, the researchers used a literature search. The data from both practice and knowledge triggers were collected between February and May 2016. The quantitative data were analyzed through frequency and percentage distributions, and the qualitative data were analyzed through a content analysis. Results: The problems of care gained from practice and knowledge triggers were consistent and were identified as holistic issues, including 1) insufficient feeding, 2) risks of respiratory tract infections and physical disorders, 3) psychological problems, such as anxiety, stress, and distress, 4) socioeconomic problems, such as stigmatization, isolation, and loss of income, 5)spiritual problems, such as low self-esteem and low quality of life, 6) school absence and learning limitation, 7) lack of knowledge about CLP and its treatments, 8) misunderstanding towards roles among the multidisciplinary team, 9) no available services, and 10) shortage of healthcare professionals, especially speech-language pathologists (SLPs). Conclusion: From evidence-triggers, the problems of care affect the patients and their caregivers holistically. Integrated long-term care by the multidisciplinary team is needed for children with CLP starting from birth to adolescent. Nurses should provide effective care to these patients and their caregivers by using a holistic approach and working collaboratively with other healthcare providers in the multidisciplinary team.

Keywords: evidence-triggers, cleft lip, cleft palate, problems of care

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920 Cloud Based Supply Chain Traceability

Authors: Kedar J. Mahadeshwar

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Concept introduction: This paper talks about how an innovative cloud based analytics enabled solution that could address a major industry challenge that is approaching all of us globally faster than what one would think. The world of supply chain for drugs and devices is changing today at a rapid speed. In the US, the Drug Supply Chain Security Act (DSCSA) is a new law for Tracing, Verification and Serialization phasing in starting Jan 1, 2015 for manufacturers, repackagers, wholesalers and pharmacies / clinics. Similarly we are seeing pressures building up in Europe, China and many countries that would require an absolute traceability of every drug and device end to end. Companies (both manufacturers and distributors) can use this opportunity not only to be compliant but to differentiate themselves over competition. And moreover a country such as UAE can be the leader in coming up with a global solution that brings innovation in this industry. Problem definition and timing: The problem of counterfeit drug market, recognized by FDA, causes billions of dollars loss every year. Even in UAE, the concerns over prevalence of counterfeit drugs, which enter through ports such as Dubai remains a big concern, as per UAE pharma and healthcare report, Q1 2015. Distribution of drugs and devices involves multiple processes and systems that do not talk to each other. Consumer confidence is at risk due to this lack of traceability and any leading provider is at risk of losing its reputation. Globally there is an increasing pressure by government and regulatory bodies to trace serial numbers and lot numbers of every drug and medical devices throughout a supply chain. Though many of large corporations use some form of ERP (enterprise resource planning) software, it is far from having a capability to trace a lot and serial number beyond the enterprise and making this information easily available real time. Solution: The solution here talks about a service provider that allows all subscribers to take advantage of this service. The solution allows a service provider regardless of its physical location, to host this cloud based traceability and analytics solution of millions of distribution transactions that capture lots of each drug and device. The solution platform will capture a movement of every medical device and drug end to end from its manufacturer to a hospital or a doctor through a series of distributor or retail network. The platform also provides advanced analytics solution to do some intelligent reporting online. Why Dubai? Opportunity exists with huge investment done in Dubai healthcare city also with using technology and infrastructure to attract more FDI to provide such a service. UAE and countries similar will be facing this pressure from regulators globally in near future. But more interestingly, Dubai can attract such innovators/companies to run and host such a cloud based solution and become a hub of such traceability globally.

Keywords: cloud, pharmaceutical, supply chain, tracking

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919 The GRIT Study: Getting Global Rare Disease Insights Through Technology Study

Authors: Aneal Khan, Elleine Allapitan, Desmond Koo, Katherine-Ann Piedalue, Shaneel Pathak, Utkarsh Subnis

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Background: Disease management of metabolic, genetic disorders is long-term and can be cumbersome to patients and caregivers. Patient-Reported Outcome Measures (PROMs) have been a useful tool in capturing patient perspectives to help enhance treatment compliance and engagement with health care providers, reduce utilization of emergency services, and increase satisfaction with their treatment choices. Currently, however, PROMs are collected during infrequent and decontextualized clinic visits, which makes translation of patient experiences challenging over time. The GRIT study aims to evaluate a digital health journal application called Zamplo that provides a personalized health diary to record self-reported health outcomes accurately and efficiently in patients with metabolic, genetic disorders. Methods: This is a randomized controlled trial (RCT) (1:1) that assesses the efficacy of Zamplo to increase patient activation (primary outcome), improve healthcare satisfaction and confidence to manage medications (secondary outcomes), and reduce costs to the healthcare system (exploratory). Using standardized online surveys, assessments will be collected at baseline, 1 month, 3 months, 6 months, and 12 months. Outcomes will be compared between patients who were given access to the application versus those with no access. Results: Seventy-seven patients were recruited as of November 30, 2021. Recruitment for the study commenced in November 2020 with a target of n=150 patients. The accrual rate was 50% from those eligible and invited for the study, with the majority of patients having Fabry disease (n=48) and the remaining having Pompe disease and mitochondrial disease. Real-time clinical responses, such as pain, are being measured and correlated to disease-modifying therapies, supportive treatments like pain medications, and lifestyle interventions. Engagement with the application, along with compliance metrics of surveys and journal entries, are being analyzed. An interim analysis of the engagement data along with preliminary findings from this pilot RCT, and qualitative patient feedback will be presented. Conclusions: The digital self-care journal provides a unique approach to disease management, allowing patients direct access to their progress and actively participating in their care. Findings from the study can help serve the virtual care needs of patients with metabolic, genetic disorders in North America and the world over.

Keywords: eHealth, mobile health, rare disease, patient outcomes, quality of life (QoL), pain, Fabry disease, Pompe disease

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918 The Risks of 'Techtopia': Reviewing the Negative Lessons of Smart City Development

Authors: Amanda Grace Ahl, Matthew Brummer

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‘Smart cities’ are not always as ‘smart’ as the term suggests, which is not often covered in the associated academic and public policy literatures. In what has become known as the smart city approach to urban planning, governments around the world are seeking to harness the power of information and communications technology with increasingly advanced data analytics to address major social, economic, and environmental issues reshaping the ways people live. The definitional and theoretical boundaries of the smart city framework are broad and at times ambiguous, as is empirical treatment of the topic. However, and for all the disparity, in investigating any number of institutional and policy prescriptions to the challenges faced by current and emerging metropoles, scholarly thought has hinged overwhelmingly on value-positive conceptions of informatics-centered design. From enhanced quality of services, to increased efficiency of resources, to improved communication between societal stakeholders, the smart city design is championed as a technological wellspring capable of providing answers to the systemic issues stymying a utopian image of the city. However, it is argued that this ‘techtopia’, has resulted in myopia within the discipline as to value-negative implications of such planning, such as weaknesses in practicality, scalability, social equity and affordability of solutions. In order to more carefully examine this observation - that ‘stupid’ represents an omitted variable bias in the study of ‘smart’ - this paper reviews critical cases of unsuccessful smart city developments. It is argued that also understanding the negative factors affiliated with the development processes is imperative for the advancement of theoretical foundations, policies, and strategies to further the smart city as an equitable, holistic urban innovation. What emerges from the process-tracing carried out in this study are distinctly negative lessons of smart city projects, the significance of which are vital for understanding how best to conceive smart urban planning in the 21st century.

Keywords: case study, city management, innovation system, negative lessons, smart city development

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917 Defining the Push and Pull Factors to Adopt Health Information Technologies by Health Entrepreneurs

Authors: Elaheh Ezami, Behzad Mohammadian, Elham Aznab

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Health service design will need to change due to bringing in new digital health tools. This highlights the importance of innovation in adopting Health Information Technology (HIT). It can be argued that innovation in the health sector correlates with entrepreneurship. Various reasons exist for health entrepreneurs to advocate increased investment in HIT to compensate for shortcomings in the health sector and improve the quality of healthcare. Furthermore, every innovative program presents challenges and motivations for entrepreneurs that may distract or encourage the adoption of technology. Our study used a systematic literature review to identify relevant articles that defined the frustrations and promotions of using health information technology in organizations or enterprises. A meta-analysis of the articles was conducted to identify the factors driving or pulling entrepreneurs to use HIT.

Keywords: health information technology, health entrepreneurship, health enterprise, health entrepreneurs' innovation

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916 The Bloom of 3D Printing in the Health Care Industry

Authors: Mihika Shivkumar, Krishna Kumar, C. Perisamy

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3D printing is a method of manufacturing wherein materials, such as plastic or metal, are deposited in layers one on top of the other to produce a three dimensional object. 3D printing is most commonly associated with creating engineering prototypes. However, its applications in the field of human health care have been frequently disregarded. Medical applications for 3D printing are expanding rapidly and are envisaged to revolutionize health care. Medical applications for 3D printing, both present and its potential, can be categorized broadly, including: creation of customized prosthetics tissue and organ fabrication; creation of implants, and anatomical models and pharmaceutical research regarding drug dosage forms. This piece breaks down bioprinting in the healthcare sector. It focuses on the better subtle elements of every particular point, including how 3D printing functions in the present, its impediments, and future applications in the health care sector.

Keywords: bio-printing, prototype, drug delivery, organ regeneration

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915 The Computational Psycholinguistic Situational-Fuzzy Self-Controlled Brain and Mind System Under Uncertainty

Authors: Ben Khayut, Lina Fabri, Maya Avikhana

Abstract:

The models of the modern Artificial Narrow Intelligence (ANI) cannot: a) independently and continuously function without of human intelligence, used for retraining and reprogramming the ANI’s models, and b) think, understand, be conscious, cognize, infer, and more in state of Uncertainty, and changes in situations, and environmental objects. To eliminate these shortcomings and build a new generation of Artificial Intelligence systems, the paper proposes a Conception, Model, and Method of Computational Psycholinguistic Cognitive Situational-Fuzzy Self-Controlled Brain and Mind System (CPCSFSCBMSUU) using a neural network as its computational memory, operating under uncertainty, and activating its functions by perception, identification of real objects, fuzzy situational control, forming images of these objects, modeling their psychological, linguistic, cognitive, and neural values of properties and features, the meanings of which are identified, interpreted, generated, and formed taking into account the identified subject area, using the data, information, knowledge, and images, accumulated in the Memory. The functioning of the CPCSFSCBMSUU is carried out by its subsystems of the: fuzzy situational control of all processes, computational perception, identifying of reactions and actions, Psycholinguistic Cognitive Fuzzy Logical Inference, Decision making, Reasoning, Systems Thinking, Planning, Awareness, Consciousness, Cognition, Intuition, Wisdom, analysis and processing of the psycholinguistic, subject, visual, signal, sound and other objects, accumulation and using the data, information and knowledge in the Memory, communication, and interaction with other computing systems, robots and humans in order of solving the joint tasks. To investigate the functional processes of the proposed system, the principles of Situational Control, Fuzzy Logic, Psycholinguistics, Informatics, and modern possibilities of Data Science were applied. The proposed self-controlled System of Brain and Mind is oriented on use as a plug-in in multilingual subject Applications.

Keywords: computational brain, mind, psycholinguistic, system, under uncertainty

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914 An Audit to Look at the Management of Paediatric Peri Orbital Cellulitis in a District General Hospital, Emergency Department

Authors: Ruth Green, Samantha Milton, Rinal Desai

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Background/Aims: Eye pain/swelling/redness is a common presentation to Barnet General Hospital (a district general hospital), pediatric emergency department, and is managed by both the pediatric and emergency teams. The management of each child differs dramatically depending on the healthcare professional who reviews them. There also appears to be confusion in diagnosis between periorbital cellulitis, pre-septal cellulitis, and orbital cellulitis. Pre septal cellulitis refers to an inflammation of the eyelids and soft tissue anterior to the orbital septum. In contrast, orbital cellulitis is a serious, rapidly progressive infection of soft tissues located posterior to the orbital septum. Pre-septal cellulitis is more prevalent and less serious than orbital cellulitis, although it may be part of a continuous spectrum if untreated. Pre-septal cellulitis should there be diagnosed and treated urgently to prevent spread to the septum. For the purpose of the audit, the term periorbital cellulitis has been used as an umbrella term for all spectrums of this infection. The audit aimed to look at, how as a whole, the department is diagnosing and managing orbital and pre-septal cellulitis. Gold Standard: Patients of the same age and diagnosis should be treated with the same medication, advice, and follow-up. Method: Data was collected retrospectively from pediatric patients ( < 18years) who attended the emergency department from June 2019 to February 2020 who had been coded as pre-septal cellulitis, periorbital cellulitis, orbital cellulitis, or eye pain/swelling/redness. Demographics, signs and symptoms, management, and follow-up were recorded for all patients with any of the diagnoses of pre-septal, periorbital, or orbital cellulitis. A Microsoft Excel spreadsheet was used to record the anonymised data. Results: There were vast discrepancies in the diagnosis, management, and follow-up of patients with periorbital cellulitis. Conclusion/Discussion: The audit concluded there is no uniform approach to managing periorbital cellulitis in Barnet General Hospital Paediatric Emergency Department. Healthcare professionals misdiagnosed conjunctivitis as periorbital cellulitis, and adequate steps did not appear to be documented on excluding red flag signs and symptoms of patients presenting. There was no consistency in follow-up, with some patients having timely phone reviews or clinical reviews for mild symptoms. Advice given by the staff was appropriate, and patients did return when symptoms got worse and were treated accordingly. Plan: Given the inconsistency, a gold standard care pathway or local easily accessible clinical guideline can be developed to help with the diagnosis and management of periorbital cellulitis. Along with this, a teaching session can be carried out for the staff of the pediatric team and emergency department to disseminate the teaching. Following the introduction of a guideline and teaching sessions, patients notes can be re-reviewed to check improvement in patient care.

Keywords: periorbital cellulitis, preseptal cellulitis, orbital cellulitis, erythematous eyelid

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913 Experiences of Pediatric Cancer Patients and Their Families: A Focus Group Interview

Authors: Bu Kyung Park

Abstract:

Background: The survival rate of pediatric cancer patients has been increased. Thus, the needs of long-term management and follow-up education after discharge continue to grow. Purpose: The purpose of this study was to explore the experiences of pediatric cancer patients and their families from first diagnosis to returning their social life. The ultimate goal of this study was to assess which information and intervention did pediatric cancer patients and their families required and needed, so that this could provide fundamental information for developing educational content of web-based intervention program for pediatric cancer patients. Research Approach: This study was based on a descriptive qualitative research design using semi-structured focus group interview. Participants: Twelve pediatric cancer patients and 12 family members participated in a total six focus group interview sessions. Methods: All interviews were audiotaped after obtaining participants’ approval. The recordings were transcribed. Qualitative Content analysis using the inductive coding approach was performed on the transcriptions by three coders. Findings: Eighteen categories emerged from the six main themes: 1) Information needs, 2) Support system, 3) Barriers to treatment, 4) Facilitators to treatment, 5) Return to social life, 6) Healthcare system issues. Each theme had both pediatric cancer patients’ codes and their family members’ codes. Patients and family members had high information needs through the whole process of treatment, not only the first diagnosis but also after completion of treatment. Hospitals provided basic information on chemo therapy, medication, and various examinations. However, they were more likely to rely on information from other patients and families by word of mouth. Participants’ information needs were different according to their treatment stage (e.g., first admitted patients versus cancer survivors returning to their social life). Even newly diagnosed patients worried about social adjustment after completion of all treatment, such as return to school and diet and physical activity at home. Most family members had unpleasant experiences while they were admitted in hospitals and concerned about healthcare system issues, such as medical error and patient safety. Conclusions: In conclusion, pediatric cancer patients and their family members wanted information source which can provide tailored information based on their needs. Different information needs with patients and their family members based on their diagnosis, progress, stage of treatment were identified. Findings from this study will be used to develop a patient-centered online health intervention program for pediatric cancer patients. Pediatric cancer patients and their family members had variety fields of education needs and soak the information from various sources. Web-based health intervention program for them is required to satisfy their inquiries to provide reliable information.

Keywords: focus group interview, family caregivers, pediatric cancer patients, qualitative content analysis

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912 Factors Associated with Treatment Adherence among Pulmonary Tuberculosis Patients in New Delhi

Authors: Ilham Zaidi, P. Sankara Sarma, Quazi Taufique Ahmed, V. Raman Kutty, Khalid Umer Khayyam, Gurpreet Singh, Abhishek Royal

Abstract:

Introduction: Tuberculosis is a global public health emergency, but it is particularly acute in India, which has the world's highest tuberculosis burden. Due to overpopulation, lack of sanitation, malnutrition, low living standards, and poor socioeconomic status, among other factors, it is India's most common infectious disease. The long period of treatment is one of the main reasons for considering it as a public health emergency. Consequently, there is an increase in patient noncompliance, which leads to treatment failure, adverse treatment outcomes, and deaths. This could lead to the growth of anti-TB drug resistance. According to the WHO, approximately 558 thousand new cases of Multi-Drug Resistance Tuberculosis were diagnosed worldwide, with 8.5 percent developed Extensively Drug Resistance Tuberculosis. Methodology: This study is a program-based cross-sectional descriptive survey of adult tuberculosis patients enrolled in the Delhi-based Revised National Tuberculosis Program. The study setting was 27 NTEP districts of Delhi. (N=65,893) and Sample size- was 200; the sampling method which is used in the study was the systemic random sampling method. Results: Most of the demographic factors (age, gender, residence, and family type) were not significantly associated with adherence; marital status was found statistically significant with the treatment compliance. Hesitation while telling people about the disease and motivation to strictly follow drug schedule by healthcare workers were other factors where a significant association with drug adherence was observed. The study findings also suggest that provision of food, minimal financial and other moral support from family, counseling, discussion and politeness by healthcare providers might also facilitate adherence. Discussion and Conclusions: For TB treatment, adherence, age, sex, socioeconomic status, types of accommodations, malnutrition, and personal hygiene should all be considered; similar results were observed in previous studies. In the care of TB patients, DOTS services, health workers, and family support play a significant role. According to the country's National Strategic Plan, the Indian government has set a goal of eliminating tuberculosis by 2025 and patients' compliance with TB care and treatment adherence is very crucial to achieve this aim. A cohort study will be able to give a better understanding of factors associated with adherence since this study may have missed some defaulters who were absconding and could not be reached. Important Terms: RNTCP, NTEP, DOTS, DS-TB, DR-TB, RR-TB, MDR-TB, XDR-TB, Treatment failure, Treatment relapse, Treatment adherence.

Keywords: treatment adherence, treatment relapse, treatment failure, drug resistance tuberculosis

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911 Factors Influencing Intention to Engage in Long-term Care Services among Nursing Aide Trainees and the General Public

Authors: Ju-Chun Chien

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Rapid aging and depopulation could lead to serious problems, including workforce shortages and health expenditure costs. The current and predicted future LTC workforce shortages could be a real threat to Taiwan’s society. By means of comparison of data from 144 nursing aide trainees and 727 general public, the main purpose of the present study was to determine whether there were any notable differences between the two groups toward engaging in LTC services. Moreover, this study focused on recognizing the attributes of the general public who had the willingness to take LTC jobs but continue to ride the fence. A self-developed questionnaire was designed based on Ajzen’s Theory of Planned Behavior model. After conducting exploratory factor analysis (EFA) and reliability analysis, the questionnaire was a reliable and valid instrument for both nursing aide trainees and the general public. The main results were as follows: Firstly, nearly 70% of nursing aide trainees showed interest in LTC jobs. Most of them were middle-aged female (M = 46.85, SD = 9.31), had a high school diploma or lower, had unrelated work experience in healthcare, and were mostly unemployed. The most common reason for attending the LTC training program was to gain skills in a particular field. The second most common reason was to obtain the license. The third and fourth reasons were to be interested in caring for people and to increase income. The three major reasons that might push them to leave LTC jobs were physical exhaustion, payment is bad, and being looked down on. Secondly, the variables that best-predicted nursing aide trainees’ intention to engage in LTC services were having personal willingness, perceived behavior control, with high school diploma or lower, and supported from family and friends. Finally, only 11.80% of the general public reported having interest in LTC jobs (the disapproval rating was 50% for the general public). In comparison to nursing aide trainees who showed interest in LTC settings, 64.8% of the new workforce for LTC among the general public was male and had an associate degree, 54.8% had relevant healthcare experience, 67.1% was currently employed, and they were younger (M = 32.19, SD = 13.19) and unmarried (66.3%). Furthermore, the most commonly reason for the new workforce to engage in LTC jobs were to gain skills in a particular field. The second priority was to be interested in caring for people. The third and fourth most reasons were to give back to society and to increase income, respectively. The top five most commonly reasons for the new workforce to quitting LTC jobs were listed as follows: physical exhaustion, being looked down on, excessive working hours, payment is bad, and excessive job stress.

Keywords: long-term care services, nursing aide trainees, Taiwanese people, theory of planned behavior

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910 Functionalization of Nanomaterials for Bio-Sensing Applications: Current Progress and Future Prospective

Authors: Temesgen Geremew Tefery

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Nanomaterials, due to their unique properties, have revolutionized the field of biosensing. Their functionalization, or modification with specific molecules, is crucial for enhancing their biocompatibility, selectivity, and sensitivity. This review explores recent advancements in nanomaterial functionalization for biosensing applications. We discuss various strategies, including covalent and non-covalent modifications, and their impact on biosensor performance. The use of biomolecules like antibodies, enzymes, and nucleic acids for targeted detection is highlighted. Furthermore, the integration of nanomaterials with different sensing modalities, such as electrochemical, optical, and mechanical, is examined. The future outlook for nanomaterial-based biosensing is promising, with potential applications in healthcare, environmental monitoring, and food safety. However, challenges related to biocompatibility, scalability, and cost-effectiveness need to be addressed. Continued research and development in this area will likely lead to even more sophisticated and versatile biosensing technologies.

Keywords: biosensing, nanomaterials, biotechnology, nanotechnology

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909 'CardioCare': A Cutting-Edge Fusion of IoT and Machine Learning to Bridge the Gap in Cardiovascular Risk Management

Authors: Arpit Patil, Atharav Bhagwat, Rajas Bhope, Pramod Bide

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This research integrates IoT and ML to predict heart failure risks, utilizing the Framingham dataset. IoT devices gather real-time physiological data, focusing on heart rate dynamics, while ML, specifically Random Forest, predicts heart failure. Rigorous feature selection enhances accuracy, achieving over 90% prediction rate. This amalgamation marks a transformative step in proactive healthcare, highlighting early detection's critical role in cardiovascular risk mitigation. Challenges persist, necessitating continual refinement for improved predictive capabilities.

Keywords: cardiovascular diseases, internet of things, machine learning, cardiac risk assessment, heart failure prediction, early detection, cardio data analysis

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908 Using Knowledge Management and Visualisation Concepts to Improve Patients and Hospitals Staff Workflow

Authors: A. A. AlRasheed, A. Atkins, R. Campion

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This paper focuses on using knowledge management and visualisation concepts to improve the patients and hospitals employee’s workflow. Hospitals workflow is a complex and complicated process and poor patient flow can put both patients and a hospital’s reputation at risk, and can threaten the facility’s financial sustainability. Healthcare leaders are under increased pressure to reduce costs while maintaining or increasing patient care standards. In this paper, a framework is proposed to help improving patient experience, staff satisfaction, and operational efficiency across hospitals by using knowledge management based visualisation concepts. This framework is using real-time visibility to track and monitor location and status of patients, staff, rooms, and medical equipment.

Keywords: knowledge management, improvements, visualisation, workflow

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907 Factors Influencing the Uptake of Vaccinations amongst Pregnant Women Following the COVID-19 Pandemic

Authors: Jo Parsons, Cath Grimley, Debra Bick, Sarah Hillman, Louise Clarke, Helen Atherton

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The problem: Vaccinations are routinely offered to pregnant women in the UK for influenza (flu), pertussis (whooping cough), and COVID-19, yet the uptake of these vaccinations in pregnancy remains low. Pregnant women are at increased risk of hospitalisation, morbidity, and mortality from these preventable illnesses, which can also expose their unborn babies to an increased risk of serious complications, including in utero death. This research aims to explore how pregnant women feel about vaccinations offered during pregnancy (flu, whooping cough, and COVID-19), particularly following the COVID-19 pandemic. It also aims to examine factors influencing women’s decisions about vaccinations during pregnancy and how they feel about their health and vulnerabilities to illness arising from the COVID-19 pandemic. The approach: This is a qualitative study involving semi-structured interviews with pregnant women and midwives in the UK. Interviews with pregnant women explored their views since the COVID-19 pandemic about vaccinations offered during pregnancy and whether the pandemic has influenced perceptions of vulnerability to illness in pregnant women. Interviews with midwives explored vaccination discussions they routinely have with pregnant women and identified some of the barriers to vaccination that pregnant women discuss with them. Pregnant women were recruited via participating hospitals and community groups. Midwives were recruited via participating hospitals and midwife-specific social media groups. All interviews were conducted remotely (using telephone or Microsoft Teams) and analysed using thematic analysis. Findings: 43 pregnant women and 16 midwives were recruited and interviewed. The findings presented will focus on data from pregnant women. Pregnant women reported a wide range of views and vaccination behaviour, and identified several factors influencing their decision whether to accept vaccinations or not. These included internal factors (comprised of beliefs about susceptibility to illness, perceptions of immunity, fear, and feelings of responsibility), other influences (including visibility of illness and external influences such as healthcare professional recommendations), vaccination-related factors (comprised of beliefs about effectiveness and safety of vaccinations, availability and accessibility of vaccinations and preferences for alternative forms of protection to vaccination) and COVID-19 specific factors (including COVID-19 vaccinations and COVID-19 specific influences). Implications: Findings identified some of the factors that affect pregnant women’s decisions when deciding to have a vaccination or not and how these decisions have been influenced by COVID-19. Findings highlight areas where healthcare professional advice needs to focus, such as the provision of information about the increased vulnerability to illnesses during pregnancy and consideration of opportunistic vaccination at hospital appointments to maximise uptake of vaccinations during pregnancy. Findings of this study will inform the development of an intervention to increase vaccination uptake amongst pregnant women.

Keywords: vaccination, pregnancy, qualitative, interviews, COVID-19

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906 Exploring Factors That May Contribute to the Underdiagnosis of Hereditary Transthyretin Amyloidosis in African American Patients

Authors: Kelsi Hagerty, Ami Rosen, Aaliyah Heyward, Nadia Ali, Emily Brown, Erin Demo, Yue Guan, Modele Ogunniyi, Brianna McDaniels, Alanna Morris, Kunal Bhatt

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Hereditary transthyretin amyloidosis (hATTR) is a progressive, multi-systemic, and life-threatening disease caused by a disruption in the TTR protein that delivers thyroxine and retinol to the liver. This disruption causes the protein to misfold into amyloid fibrils, leading to the accumulation of the amyloid fibrils in the heart, nerves, and GI tract. Over 130 variants in the TTR gene are known to cause hATTR. The Val122Ile variant is the most common in the United States and is seen almost exclusively in people of African descent. TTR variants are inherited in an autosomal dominant fashion and have incomplete penetrance and variable expressivity. Individuals with hATTR may exhibit symptoms from as early as 30 years to as late as 80 years of age. hATTR is characterized by a wide range of clinical symptoms such as cardiomyopathy, neuropathy, carpal tunnel syndrome, and GI complications. Without treatment, hATTR leads to progressive disease and can ultimately lead to heart failure. hATTR disproportionately affects individuals of African descent; the estimated prevalence of hATTR among Black individuals in the US is 3.4%. Unfortunately, hATTR is often underdiagnosed and misdiagnosed because many symptoms of the disease overlap with other cardiac conditions. Due to the progressive nature of the disease, multi-systemic manifestations that can lead to a shortened lifespan, and the availability of free genetic testing and promising FDA-approved therapies that enhance treatability, early identification of individuals with a pathogenic hATTR variant is important, as this can significantly impact medical management for patients and their relatives. Furthermore, recent literature suggests that TTR genetic testing should be performed in all patients with suspicion of TTR-related cardiomyopathy, regardless of age, and that follow-up with genetic counseling services is recommended. Relatives of patients with hATTR benefit from genetic testing because testing can identify carriers early and allow relatives to receive regular screening and management. Despite the striking prevalence of hATTR among Black individuals, hATTR remains underdiagnosed in this patient population, and germline genetic testing for hATTR in Black individuals seems to be underrepresented, though the reasons for this have not yet been brought to light. Historically, Black patients experience a number of barriers to seeking healthcare that has been hypothesized to perpetuate the underdiagnosis of hATTR, such as lack of access and mistrust of healthcare professionals. Prior research has described a myriad of factors that shape an individual’s decision about whether to pursue presymptomatic genetic testing for a familial pathogenic variant, such as family closeness and communication, family dynamics, and a desire to inform other family members about potential health risks. This study explores these factors through 10 in-depth interviews with patients with hATTR about what factors may be contributing to the underdiagnosis of hATTR in the Black population. Participants were selected from the Emory University Amyloidosis clinic based on having a molecular diagnosis of hATTR. Interviews were recorded and transcribed verbatim, then coded using MAXQDA software. Thematic analysis was completed to draw commonalities between participants. Upon preliminary analysis, several themes have emerged. Barriers identified include i) Misdiagnosis and a prolonged diagnostic odyssey, ii) Family communication and dynamics surrounding health issues, iii) Perceptions of healthcare and one’s own health risks, and iv) The need for more intimate provider-patient relationships and communication. Overall, this study gleaned valuable insight from members of the Black community about possible factors contributing to the underdiagnosis of hATTR, as well as potential solutions to go about resolving this issue.

Keywords: cardiac amyloidosis, heart failure, TTR, genetic testing

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905 Investigation of a Technology Enabled Model of Home Care: the eShift Model of Palliative Care

Authors: L. Donelle, S. Regan, R. Booth, M. Kerr, J. McMurray, D. Fitzsimmons

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Palliative home health care provision within the Canadian context is challenged by: (i) a shortage of registered nurses (RN) and RNs with palliative care expertise, (ii) an aging population, (iii) reliance on unpaid family caregivers to sustain home care services with limited support to conduct this ‘care work’, (iv) a model of healthcare that assumes client self-care, and (v) competing economic priorities. In response, an interprofessional team of service provider organizations, a software/technology provider, and health care providers developed and implemented a technology-enabled model of home care, the eShift model of palliative home care (eShift). The eShift model combines communication and documentation technology with non-traditional utilization of health human resources to meet patient needs for palliative care in the home. The purpose of this study was to investigate the structure, processes, and outcomes of the eShift model of care. Methodology: Guided by Donebedian’s evaluation framework for health care, this qualitative-descriptive study investigated the structure, processes, and outcomes care of the eShift model of palliative home care. Interviews and focus groups were conducted with health care providers (n= 45), decision-makers (n=13), technology providers (n=3) and family care givers (n=8). Interviews were recorded, transcribed, and a deductive analysis of transcripts was conducted. Study Findings (1) Structure: The eShift model consists of a remotely-situated RN using technology to direct care provision virtually to patients in their home. The remote RN is connected virtually to a health technician (an unregulated care provider) in the patient’s home using real-time communication. The health technician uses a smartphone modified with the eShift application and communicates with the RN who uses a computer with the eShift application/dashboard. Documentation and communication about patient observations and care activities occur in the eShift portal. The RN is typically accountable for four to six health technicians and patients over an 8-hour shift. The technology provider was identified as an important member of the healthcare team. Other members of the team include family members, care coordinators, nurse practitioners, physicians, and allied health. (2) Processes: Conventionally, patient needs are the focus of care; however within eShift, the patient and the family caregiver were the focus of care. Enhanced medication administration was seen as one of the most important processes, and family caregivers reported high satisfaction with the care provided. There was perceived enhanced teamwork among health care providers. (3) Outcomes: Patients were able to die at home. The eShift model enabled consistency and continuity of care, and effective management of patient symptoms and caregiver respite. Conclusion: More than a technology solution, the eShift model of care was viewed as transforming home care practice and an innovative way to resolve the shortage of palliative care nurses within home care.

Keywords: palliative home care, health information technology, patient-centred care, interprofessional health care team

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