Participation in research improves overall patient management: insights from the Global Rheumatic Heart Disease registry (REMEDY)

Abstract

SummaryBackgroundRheumatic heart disease (RHD) is a major public health problem in low– and middle–income countries (LMICs), with a paucity of high–quality trial data to improve patient outcomes. Investigators felt that involvement in a recent large, observational RHD study impacted positively on their practice, but this was poorly defined.AimThe purpose of this study was to document the experience of investigators and research team members from LMICs who participated in a prospective, multi–centre study, the global Rheumatic Heart Disease Registry (REMEDY), conducted in 25 centres in 14 countries from 2010 to 2012. MethodsWe conducted an online survey of site personnel to identify and quantify their experiences. Telephone interviews were conducted with a subset of respondents to gather additional qualitative data. We asked about their experiences, positive and negative, and about any changes in RHD management practices resulting from their participation in REMEDY as a registry site.ResultsThe majority of respondents in both the survey and telephone interviews indicated that participation as a registry site improved their management of RHD patients. Administrative changes included increased attention to follow–up appointments and details in patient records. Clinical changes included increased use of penicillin prophylaxis, and more frequent INR monitoring and contraceptive counselling.ConclusionsOur study demonstrates that participation in clinical research on RHD can have a positive impact on patient management. Furthermore, REMEDY has led to increased patient awareness and improved healthcare workers’ knowledge and efficiency in caring for RHD patients.

<p>Rheumatic Heart Disease Patients’ Adherence to Secondary Prophylaxis and Associated Factors at Hospitals in Jimma Zone, Southwest Ethiopia: A Multicenter Study</p>

“…The present finding was also consistent with other studies conducted in Africa: Uganda, 56,57 Malawi 58 , Tanzania, 59 and South Africa. 60 In this study, the commonest reasons reported for missing monthly benzathine prophylaxis injections was long distance from hospitals (56.9%), lack of money (38%), unaffordability (30.8%), and inconvenient work schedule (22.5%). This finding is also supported by different studies.…”

“…The present finding was also consistent with other studies conducted in Africa: Uganda, 56 , 57 Malawi 58 , Tanzania, 59 and South Africa. 60 …”

Design and Implementation of Postgraduate Programs in Health in a Resource-Limited Setting in Mozambique (The Lúrio University)

“…Indeed, the experience of research team members from UEM teaching hospital that was the core part of our program was evaluated through an online survey complemented with telephone interviews to gather additional qualitative data, demonstrating that participation in clinical research has a positive impact on patient management. 49 Furthermore, we have developed sustainable strategies and a network of national and international academic institutions working together on multiple common goals (UniLúrio, UEM, UPM, UniZambeze, UCSD, UNL-IHMT, Oporto University, Universidad de Granada, Universidade do Aveiro, Universidade Técnica de Lisboa, Universidade Federal de Minas Gerais). We have followed other initiatives which were successful such as the Better Health Information for Better Health Policy (INDEPTH) network, Consortium for Health Systems Policy Analysis in Africa (CHEPSAA), the partnership between Makerere University and Karolinska Institutet, the African/Asian Regional Capacity Development and RAHI-SATHI Indo-US are underway elsewhere.…”

‘We always find things to learn from.’ Lessons from the implementation of the global maternal sepsis study on research capacity: a qualitative study

“…Moreover, although there is an opportunity for local research teams to positively impact maternal sepsis management, challenges regarding institutional management and resource allocation, may hinder such improvement [ 10 ].…”

“…Evidence shows that participation in a large multi-country study, like the Global Maternal Sepsis Study (GLOSS), [ 9 ] can potentially improve clinical management of patients [ 10 ] and enhance local research capacity. While GLOSS was not designed to intentionally build the capacities of local researchers, some specific activities (Additional file 1 ) allowed for capacity strengthening.…”