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Transition to an in-facility electronic Tuberculosis register: Lessons from a South African pilot project.

ABSTRACT: Background:South Africa has one of the highest incidences of Tuberculosis (TB) globally. High co-morbid HIV prevalence complicates TB management and treatment outcomes. Growing evidence suggests that integrating the TB and HIV programmes will improve the overall results. Objectives:To describe how TB programme staff at various levels of the South African health system responded to the transition from a paper-based to an electronic register of TB data integrated with HIV programme data. Method:Three primary health service facilities in the Cape Winelands district, Western Cape province, South Africa served as pilot sites for implementation. Semi-structured interviews were conducted with 21 TB programme staff purposively selected at facility, sub-district, district and provincial levels of the health system, based on their involvement in implementing electronic TB data. An objective-driven thematic frame was used to analyse the data. Results:Fears about the transition included reductions in data quality, changes to the status quo and a lack of computer literacy. Participants acknowledged benefits of reduced workloads, speed of accessing patient-level data and click-of-a-button reporting. Three factors influenced the ease of adopting the new system: firstly, implementation challenged the vertical position of the TB programme, TB data and staff's conventional roles and responsibilities; secondly, perceptions of the paper-based register as functional and reliable made the transition to electronic seem unnecessary; and thirdly, lack of a process of change management challenged staff's ability to internalise the proposed change. Conclusion:A process of change management is critical to facilitate the efficiency and effectiveness with which the electronic in-facility TB register is implemented.

SUBMITTER: Myburgh H

PROVIDER: S-EPMC7059247 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Transition to an in-facility electronic Tuberculosis register: Lessons from a South African pilot project.

Myburgh Hanlie H Peters Remco P H RPH Hurter Theunis T Grobbelaar Cornelius J CJ Hoddinott Graeme G

Southern African journal of HIV medicine 20200116 1

<h4>Background</h4>South Africa has one of the highest incidences of Tuberculosis (TB) globally. High co-morbid HIV prevalence complicates TB management and treatment outcomes. Growing evidence suggests that integrating the TB and HIV programmes will improve the overall results.<h4>Objectives</h4>To describe how TB programme staff at various levels of the South African health system responded to the transition from a paper-based to an electronic register of TB data integrated with HIV programme ...[more]

PMID: 32158556

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Project description:BACKGROUND:Clinical trials management can be studied using project management theory. The CYCLE pilot randomized controlled trial (RCT) was conducted to determine the feasibility of a future rehabilitation trial of early in-bed cycling in the intensive care unit (ICU). In-bed cycling is a novel intervention, not typically available in ICUs. Implementation of this intervention requires personnel with specialized clinical expertise caring for critically ill patients and use of the in-bed cycle. Our objective was to describe the implementation and conduct of our pilot RCT using a project management approach. METHODS:We retrospectively reviewed activities, timelines, and personnel involved in the trial. We organized activities into four project management phases: initiation, planning, execution, and monitoring and controlling. Data sources included Methods Centre documents used for trial coordination and conduct, and the trial data set. We report descriptive statistics as counts and proportions and also medians and quartiles, and we summarize the lessons learned. RESULTS:Seven ICUs in Canada participated in the trial. Time from research ethics board and contracts submission to first enrolment was a median (first quartile, third quartile) of 185 (146, 209) and 162 (114, 181) days, respectively. We trained 128 personnel on the CYCLE pilot RCT protocol, and 80 (63%) completed trial-related activities. Four sites required additional training after start-up due to staff turnover and leaves of absence. Over 15?months, we screened 864 patients: 256 were eligible and 66 were enrolled. Despite an 85% consent rate, 74% (190/256) of eligible patients were not randomized, largely (80% [152/190]) due to physiotherapist availability. Thirteen percent of recruitment weeks were lost due to physiotherapist staffing shortages. We highlight five key lessons learned: (1) prepare and anticipate site needs; (2) communicate regularly; (3) proactively analyse and act on process measure data; (4) develop contingency plans; (5) express appreciation to participating sites. CONCLUSIONS:Our analysis highlights the scope of relevant activities, rigorous training and monitoring, number and types of required personnel, and time required to conduct a multicentre ICU rehabilitation intervention trial. Our lessons learned can help others interested in implementing complex intervention trials, such as rehabilitation. TRIAL REGISTRATION:ClinicalTrials.gov, NCT02377830 . Registered prospectively on 4 March 2015.

Project description:The National Institutes of Health (NIH) established the Building University Infrastructure Leading to Diversity (BUILD) initiative to increase engagement and retention of undergraduates from diverse backgrounds in biomedical research. Portland State University, in partnership with ten other academic institutions, received a BUILD award and developed the BUILD EXITO (Enhancing Cross-Disciplinary Infrastructure and Training at Oregon) project. The EXITO program offers a three-year research and mentorship experience for undergraduates in biomedical, behavioral, social science, clinical, and bioengineering disciplines. The BUILD initiative also emphasizes enhancing research capacity and infrastructure through institutional change and faculty development. A key piece of EXITO's program to enhance research capacity is offering faculty an opportunity to apply for up to $50,000 of funding to carry out a one-year pilot study. We conducted two separate RFAs for this purpose, closely modeled on NIH's Small Grant Program (R03), over two years. Principal Investigators of pilot projects were encouraged to include EXITO students, or other undergraduate students, on their research teams. Students then worked on these research projects as part of EXITO's intensive mentored research program. This paper reports on methods to conduct and implement a pilot project program intended to train primarily junior faculty members to write and submit an NIH proposal and fund successful applicants to gather pilot project data to aid in applying for future proposals. We provided a step-by-step rigorous submission and review process. We provided proposal writing and revising workshops, technical support, and helped pilot project Principal Investigators (PIs) with biosketches, IRB applications, IUCUC documents, budgets, and other proposal sections. We secured at least three external (not at any BUILD EXITO institution) reviewers for each proposal. PIs revised proposals before resubmitting and receiving their final scores. Across two RFAs, we provided funds twenty PIs to conduct pilot projects; these projects included at least 21 students working on them who received mentoring in research methods and in disseminating results. This paper describes important lessons learned, including the importance of: allotting sufficient time to recruit reviewers; recruiting reviewers through a variety of sources and methods; and assisting PIs in engaging with research administration staff at Portland State University and partner institutions. Challenges included: finding an optimal timeline that was neither too compressed nor too stretched out; encouraging applicants from distant partner institutions to apply and keeping them engaged and retained through the entire process; and assisting PIs from partner institutions to efficiently utilize Portland State University's sponsored projects department if similar resources were not available at their home institutions. Our goal is to provide guidance and insights to faculty and research-administration staff at other institutions interested in replicating or adapting EXITO's program to enhance institutional research capacity.

Project description:BACKGROUND:The Korean Undiagnosed Diseases Program (KUDP) was launched in January 2017 as a one-year pilot project to address the increasing global interest in patients with undiagnosed rare diseases. The purpose of this paper is to summarize the project results and emphasize the unmet research needs among patients with undiagnosed rare diseases in Korea. RESULTS:Patient enrollment, assessment, and diagnostic processes were determined by the KUDP clinical expert consortium. Patients followed a diagnostic workflow after being categorized into one of four groups: I) insufficient clinical information or lack of standard diagnostic processes; II) undiagnosed due to low disease awareness; III) clinically diagnosed but unconfirmed genetically due to genetic heterogeneities; or IV) unknown disease due to complex, atypical clinical presentations. After excluding two patients from group I, 97 patients were enrolled, including 10 in group II, 67 in group III, and 20 in group IV. Most of them (92 of 97, 94.8%) were pediatric patients (< 18 years old) and 59 (60.8%) were male. The primary symptoms for 80 patients (82.5%) were neurologic. During the one-year pilot study, 72 patients completed a diagnostic assessment including clinical and molecular genetic analyses; some patients also underwent pathological or biochemical analysis. Twenty-eight of these patients (28/72, 38.9%) achieved molecular genetic diagnosis. Thirteen patients were diagnosed based on traditional tests, including biochemical assay, single or targeted genetic analysis, and chromosomal microarray. We performed whole exome sequencing on 52 patients, among whom 15 (28.8%, 15/52) reached a final diagnosis. One new disorder was identified via international collaboration. CONCLUSIONS:Using an efficient clinical diagnostic workflow, this KUDP pilot study resulted in a fair diagnostic success rate, improving the potential for additional diagnoses and new scientific discovery of complex and rare diseases. KUDP also satisfied unmet needs for rare diseases with multisystem involvement, highlighting the value of emerging genomic technologies for further research into rare and still-undiagnosed conditions.

Project description:BACKGROUND:The Public Private Interface-Electronic Patient Record (PPI-ePR) system was implemented as a new electronic platform to facilitate collaboration between the public and private sectors in Hong Kong. However, its barriers to participate and benefits have not been comprehensively assessed. OBJECTIVE:This study aimed to evaluate the awareness, acceptance, perceived benefits, and obstacles to participation among private doctors and the general public. METHODS:From December 2012 to January 2013, 2435 telephone interviews were performed by trained interviewers to survey randomly selected patients who were enrolled or not enrolled in the PPI-ePR system. In addition, self-administered surveys were sent by postal mail to 4229 registered doctors in Hong Kong. The questionnaires for both patients and doctors contained questions on subjects' awareness, acceptance, and perceptions of the PPI-ePR, perceived benefits and obstacles of participating in the program, reasons for not using the system after enrolling, and perceived areas for service improvement of the system. RESULTS:More than 53.1% (266/501) of enrolled patients believed that the PPI-ePR system would improve health care quality by reducing duplicate tests and treatments, while more than 76.8% (314/409) of enrolled doctors emphasized timely access to patients' medical records as the biggest benefit of their enrollment. Among nonenrolled patients, unawareness of the project was the most popular obstacle to enrolling in the PPI-ePR system (483/1200, 40.3%). Regarding nonenrolled doctors, the complicated registration process hindered them from participating in the program the most (95/198, 48.0%). Television, newspaper, and magazine advertisements and medical profession newsletters or journals were suggested as the most effective means to encourage participation in the program among surveyed patients (1297/1701, 76.2%) and doctors (428/610, 70.2%), respectively. Lack of clinical indication requiring data extraction from other hospitals was the main reason for low level of PPI-ePR use. CONCLUSIONS:This study comprehensively assessed the popularity, perceived benefits, and hindering factors of enrolling in the PPI-ePR system in Hong Kong. Low levels of awareness, few privacy concerns, and inactive use of the PPI-ePR system were among the key features for patients and physicians. Public promotions, simplified logistics, and a user-friendly online interface were suggested to improve the coverage and effectiveness of health information exchange between private and public health care sectors.

Project description:Objectives Intimate partner violence (IPV) is an important contributor to the burden of disease in South Africa. Evidence-based approaches to IPV in primary care are lacking. This study evaluated a project that implemented a South African protocol for screening and managing IPV. This article reports primarily on the benefits of this intervention from the perspective of women IPV survivors. Design This was a project evaluation involving two urban and three rural primary care facilities. Over 4-8 weeks primary care providers screened adult women for a history of IPV within the previous 24 months and offered referral to the study nurse. The study nurse assessed and managed the women according to the protocol. Researchers interviewed the participants 1 month later to ascertain adherence to their care plan and their views on the intervention. Results In total, 168 women were assisted and 124 (73.8%) returned for follow-up. Emotional (139, 82.7%), physical (115, 68.5%), sexual (72, 42.9%) and financial abuse (72, 42.9%) was common and 114 (67.9%) were at high/severe risk of harm. Adherence to the management plan ranged from testing for syphilis 10/25 (40.0%) to consulting a psychiatric nurse 28/58 (48.3%) to obtaining a protection order 28/28 (100.0%). Over 75% perceived all aspects of their care as helpful, except for legal advice from a non-profit organisation. Women reported significant benefits to their mental health, reduced alcohol abuse, improved relationships, increased self-efficacy and reduced abusive behaviour. Two characteristics seemed particularly important: the style of interaction with the nurse and the comprehensive nature of the assessment. Conclusion Female IPV survivors in primary care experience benefit from an empathic, comprehensive approach to assessing and assisting with the clinical, mental, social and legal aspects. Primary care managers should find ways to integrate this into primary care services and evaluate it further.

Dataset Information

Transition to an in-facility electronic Tuberculosis register: Lessons from a South African pilot project.

Publications

Transition to an in-facility electronic Tuberculosis register: Lessons from a South African pilot project.

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