OAR@UM
https://www.um.edu.mt:443/library/oar
The OAR@UM digital repository system captures, stores, indexes, preserves, and distributes digital research material.2024-03-28T22:09:49ZProgress report on familial hypercholesterolaemia in Malta 2018 : the current situation and what needs to be done to improve it
https://www.um.edu.mt/library/oar/handle/123456789/120389
Title: Progress report on familial hypercholesterolaemia in Malta 2018 : the current situation and what needs to be done to improve it
Authors: Tilney, Myra Kay; Azzopardi, C.
Abstract: Introduction: FH is an autosomal dominant condition causing premature cardiovascular disease. It is underdiagnosed and undertreated worldwide-yet cost-effective treatment is available which should be started early to prevent disease progression. Expected Maltese prevalence is up to 1,700 individuals. National Premature Years of Life Lost under 65 years (PYLL-65) from cardiovascular disease is high, and FH a likely contributor. Moreover, Schedule V database has only 7 children listed as ‘genetic dyslipidaemia’ (expected number c.300). This represents a public health challenge to cardiologists, physicians, general practitioners and paediatricians. Methods: A Register was established in 2017 as an observational study based on opportunistic testing, with Dutch Lipid Clinic Network phenotypic criteria for inclusion of index cases. Monitoring of progress and quality criteria is ongoing. Cascade testing uses lower LDL cut off points for family member identification. Results: Less than 10% of potentially affected individuals have been identified; 96% of these are on statins, with 60% meeting LDL goals; most ‘Definite cases’ are not achieving target. One patient is on PCSK9 inhibition. Cascade testing has identified five cases to date. Conclusion: Under 10% of affected patients have been identified on the register, with none under 18 years. Measures to raise awareness are ongoing, including presentations to various audiences. Outcomes could be improved through the formulary inclusion of ezetimibe, and PCSK9 inhibitors. Genetic testing would improve identification, facilitating the more accurate identification of children and their early management. Disclosures: No direct funding was provided for this study. Sanofi has funded fees for consulting and lectures, and participation in seminars related to the area.122018-01-01T00:00:00ZUnaddressed privacy risks in accredited health and wellness apps : a cross-sectional systematic assessment
https://www.um.edu.mt/library/oar/handle/123456789/120388
Title: Unaddressed privacy risks in accredited health and wellness apps : a cross-sectional systematic assessment
Authors: Huckvale, Kit; Prieto, José Tomás; Tilney, Myra Kay; Benghozi, Pierre-Jean; Car, Josip
Abstract: Background: Poor information privacy practices have been identified in health apps. Medical app accreditation programs offer a mechanism for assuring the quality of apps; however, little is known about their ability to control information privacy risks. We aimed to assess the extent to which already-certified apps complied with data protection principles mandated by the largest national accreditation program. Methods: Cross-sectional, systematic, 6-month assessment of 79 apps certified as clinically safe and trustworthy by the UK NHS Health Apps Library. Protocol-based testing was used to characterize personal information collection, local-device storage and information transmission. Observed information handling practices were compared against privacy policy commitments. Results: The study revealed that 89 % (n = 70/79) of apps transmitted information to online services. No app encrypted personal information stored locally. Furthermore, 66 % (23/35) of apps sending identifying information over the Internet did not use encryption and 20 % (7/35) did not have a privacy policy. Overall, 67 % (53/79) of apps had some form of privacy policy. No app collected or transmitted information that a policy explicitly stated it would not; however, 78 % (38/49) of information-transmitting apps with a policy did not describe the nature of personal information included in transmissions. Four apps sent both identifying and health information without encryption. Although the study was not designed to examine data handling after transmission to online services, security problems appeared to place users at risk of data theft in two cases. Conclusions: Systematic gaps in compliance with data protection principles in accredited health apps question whether certification programs relying substantially on developer disclosures can provide a trusted resource for patients and clinicians. Accreditation programs should, as a minimum, provide consistent and reliable warnings about possible threats and, ideally, require publishers to rectify vulnerabilities before apps are released.2015-01-01T00:00:00ZPooling and expanding registries of familial hypercholesterolaemia to assess gaps in care and improve disease management and outcomes : Rationale and design of the global EAS Familial Hypercholesterolaemia Studies Collaboration
https://www.um.edu.mt/library/oar/handle/123456789/120387
Title: Pooling and expanding registries of familial hypercholesterolaemia to assess gaps in care and improve disease management and outcomes : Rationale and design of the global EAS Familial Hypercholesterolaemia Studies Collaboration
Authors: Vallejo-Vaz, Antonio J.; Akram, Asif; Kondapally Seshasai, Sreenivasa Rao; Cole, Della; Watts, Gerald F.; Kees Hovingh, G.; Kastelein, John J.P.; Mata, Pedro; Raal, Frederick J.; Santos, Raul D.; Soran, Handrean; Freiberger, Tomas; Abifadel, Marianne; Aguilar-Salinas, Carlos A.; Alnouri, Fahad; Alonso, Rodrigo; Al-Rasadi, Khalid; Banach, Maciej; Bogsrud, Martin P.; Bourbon, Mafalda; Bruckert, Eric; Car, Josip; Ceska, Richard; Corral, Pablo; Descamps, Olivier; Dieplinger, Hans; Do, Can T.; Durst, Ronen; Ezhov, Marat V.; Fras, Zlatko; Gaita, Dan; Gaspar, Isabel M.; Genest, Jaques; Harada-Shiba, Mariko; Jiang, Lixin; Kayikcioglu, Meral; Lam, Carolyn S.P.; Latkovskis, Gustavs; Laufs, Ulrich; Liberopoulos, Evangelos; Lin, Jie; Lin, Nan; Maher, Vincent; Majano, Nelson; David Marais, A.; März, Winfried; Mirrakhimov, Erkin; Miserez, André R.; Mitchenko, Olena; Nawawi, Hapizah; Nilsson, Lennart; Nordestgaard, Børge G.; Paragh, György; Petrulioniene, Zaneta; Pojskic, Belma; Reiner, Željko; Sahebkar, Amirhossein; Santos, Lourdes E.; Schunkert, Heribert; Shehab, Abdullah; Naceur Slimane, M.; Stoll, Mario; Su, Ta-Chen; Susekov, Andrey; Tilney, Myra Kay; Tomlinson, Brian; Tselepis, Alexandros D.; Vohnout, Branislav; Widén, Elisabeth; Yamashita, Shizuya; Catapano, Alberico L.; Ray, Kausik K.
Abstract: Background: The potential for global collaborations to better inform public health policy regarding major non-communicable diseases has been successfully demonstrated by several large-scale international consortia. However, the true public health impact of familial hypercholesterolaemia (FH), a common genetic disorder associated with premature cardiovascular disease, is yet to be reliably ascertained using similar approaches. The European Atherosclerosis Society FH Studies Collaboration (EAS FHSC) is a new initiative of international stakeholders which will help establish a global FH registry to generate large-scale, robust data on the burden of FH worldwide. Methods: The EAS FHSC will maximise the potential exploitation of currently available and future FH data (retrospective and prospective) by bringing together regional/national/international data sources with access to individuals with a clinical and/or genetic diagnosis of heterozygous or homozygous FH. A novel bespoke electronic platform and FH Data Warehouse will be developed to allow secure data sharing, validation, cleaning, pooling, harmonisation and analysis irrespective of the source or format. Standard statistical procedures will allow us to investigate cross-sectional associations, patterns of real-world practice, trends over time, and analyse risk and outcomes (e.g. cardiovascular outcomes, all-cause death), accounting for potential confounders and subgroup effects. Conclusions: The EAS FHSC represents an excellent opportunity to integrate individual efforts across the world to tackle the global burden of FH. The information garnered from the registry will help reduce gaps in knowledge, inform best practices, assist in clinical trials design, support clinical guidelines and policies development, and ultimately improve the care of FH patients.2016-01-01T00:00:00ZThe ePrescription system in development in the Maltese healthcare system – step 1 : the general practitioner perspective
https://www.um.edu.mt/library/oar/handle/123456789/120386
Title: The ePrescription system in development in the Maltese healthcare system – step 1 : the general practitioner perspective
Authors: Sacco, M.; Bezzina, G.; Buttigieg, S.; Stage, J.; Bastiaens, H.; Tilney, Myra Kay
Abstract: Introduction: Electronic prescribing is the computer-generated filling of the medical prescription, replacing the paper based method, with expectations of improved healthcare delivery and patient care. This system was recently introduced in Maltese Health Centres. Despite being routinely utilized for over a year, there is no formal feedback from end users including patients, general practitioners and pharmacists. The aim of this initial study is to describe the current usability and user experience issues of the ePrescription system from General Practitioner (GP) perspectives (1); explore in detail the experiences of General Practitioners in using e-prescription system in specific healthcare contexts (Malta and Belgium) (2), mainly trying to understand their feedback and the issues that they encounter in their day to day work. Methods: A mixed methods approach was used, starting with an online anonymised questionnaire distributed to all GPs working in primary care analysing their experience. A similar exercise took place in Belgium, enabling cross comparison which is ongoing. Subsequently, semi-structured interviews with General practitioner and other stakeholders is enabling in-depth evaluation. Results: The study should be completed by September 2018. Initial results include the completed questionnaires which are being used to inform the semi-structured interviews with end-user GPs. A total of 56 responses were obtained from the questionnaires (34% response rate); with respondents considering system improvements in the operational aspect, despite teething problems. Main Strengths: First analysis of GP end-users of the computer-generated prescription; selected interviewees enabling better understanding; quality control due with a team from Belgium. Main weaknesses: Results are based on end-user subjectivity, limited end-user participation. Conclusion: Overall, general practitioners perceive the programme as an improvement, despite teething problems in its introduction. KEYWORDS: electronic prescribing; general practitioners; questionnaires; interviews Disclosures: The authors have no conflict of interest in this study. There was no funding in this study. This work was supported by TD COST Action TD1405-European Network for the Joint Evaluation of Connected Health Technologies (ENJECT).2018-01-01T00:00:00Z