‘Nothing about me without me’ is a concept shared by many patient empowerment initiatives and in this case, underpins the philosophy of engagement with people living with and affected by Rheumatic Heart Disease (PLWRHD). Rheumatic heart disease (RHD) affects millions of people globally,1 the majority living in low- and middle-income countries and in marginalized and impoverished communities. A priority pyramid, recently conceptualized by RHD Action, the global movement dedicated to reducing the burden of rheumatic heart disease in vulnerable populations of all ages throughout the world, places the patient community firmly at the pinnacle of the priorities that need to be addressed in the global fight against RHD2 (Figure 1). Rheumatic heart disease Action have published several tools to aid RHD programme around the world3,4 as well as position statements and intentions.5–7 Figure 1 View largeDownload slide RHD action pyramid. Figure 1 View largeDownload slide RHD action pyramid. The RHD community of researchers and health care workers at University of Cape Town under the banner of the Stop RHD ASAP programme have created a tradition of patient events to include, recognize, and celebrate the RHD patient community. The ASAP programme has focused on the four pillars of Awareness, Surveillance, Advocacy, and Prevention in a grassroots approach to eradicate Acute Rheumatic Fever and Rheumatic Heart Disease in Africa.8,9 Rheumatic heart disease action priorities pyramid Our goal is to achieve a 25% reduction in mortality from rheumatic heart disease by the year 2025 in under 25-year-olds. We are working towards this goal by giving a powerful platform to existing work in RHD prevention and control, while providing new innovative tools, guidance, and opportunities to the RHD community. Our priorities synthesize ten key areas of RHD control and were developed with the participation of regional bodies, RHD research groups, and global policy advocates. These ten priorities form the core focus areas of RHD Action and are structured in a ‘priorities pyramid’ with three main categories: People and communities Medicines and technologies Systems and services The pyramid guides the programmatic work of RHD Action and informs our decision making. It reflects the primacy of people living with RHD in our activities, the essential bedrock of strong health systems, and necessary prerequisites for disease control. The first major research outputs were related to community-screening using echocardiography,10 Group A streptococcal surveillance,11 and a situational analysis around notification.12 In 2012, a Global Rheumatic Heart Disease Registry was launched and enrolment commenced in 14 countries including the co-ordinating centre in Cape Town, South Africa.13 The findings of this study revealed significant gaps in evidence-based interventions and startling morbidity at enrolment.14 Prior to presenting these findings at the European Society of Cardiology meeting in 2014, the first patient event was held (Figure 2). This was a luncheon to show appreciation for study participation and to share preliminary results of the Global Rheumatic Heart Disease Registry (REMEDY) study prior to presentation on the global stage. The findings were of great interest to the patients, and this event was marked by a vigorous question and answer session with a clearly expressed need for similar events. Figure 2 View largeDownload slide Group after first rheumatic heart disease patient event in Cape Town. Prof Bongani Mayosi of Stop rheumatic heart disease ASAP team Cape Town, South Africa seated centre. Figure 2 View largeDownload slide Group after first rheumatic heart disease patient event in Cape Town. Prof Bongani Mayosi of Stop rheumatic heart disease ASAP team Cape Town, South Africa seated centre. In 2015, the Stop RHD ASAP team, now together with the newly formed Rheumatic Heart Disease Evidence, Advocacy, Communication and Hope (RhEACH) team, added an educational demonstration component to empower the patient community with information about their disease and important healthy lifestyle choices. This new format provided an opportunity for patients to interact directly with health care providers and researchers outside the clinical environment but even more importantly, allowed for patients to hear from each other and share lessons and challenges. Based on the success and enthusiasm generated at the 2015 event, Stop RHD ASAP together with RhEACH and other RHD Action partners were joined by UCT’s Dr Jantina DeVries, a recipient of National Institute of Health (NIH) funding for a community engagement component, to hold the 2016 event. The event was held at the Cape Town International Convention Center and was facilitated by the incoming president of SA Heart and RHD Action’s Prof Liesl Zuhlke to take place within the South African Heart Association meeting. Having a patient event included in a medical congress was a first for the cardiology community in South Africa. This patient event was now called ‘Listen to my Heart’ and included international guests and patients for the first time. There is evidence that engaged patients form an important part of the output and dissemination of key messages at medical conferences and should be strongly encouraged and facilitated.15 The newly formed Groote Schuur Hospital RHD Patient Community Advisory Group was also formally introduced at this event. Patients being intrinsically involved in research is growing in popularity and scope with16 guidelines becoming available governing partnering with patients in conceptualizing trial questions, conducting research, and dissemination of findings.17 This year, 47 People living with Rheumatic Heart Disease (PLWRHD) guests attended the ‘Listen to my Heart’ event despite the grey weather that had settled over Cape Town. There were many familiar faces among the patient group this year, as well as some new faces. Notably in attendance was a new mother with RHD, whose pregnancy was successfully managed at the Groote Schuur Combined Cardio-Obstetric Clinic.18 She brought along her 7-month son, much to the delight of her fellow guests. The event included informational booths displaying heart valves, echocardiography and the genetics of RHD (Figure 3). The programme also included short presentations about the global epidemiology of RHD, the natural progression from strep throat to the valvular complications of RHD, as well as the management of RHD. A healthy eating demonstration was new to the programme this year, along with the ‘I know my heart’ quiz moderated by Professor Mark Engel based on the information and demonstrations from the entire morning. Figure 3 View largeDownload slide Prosthetic valve display to patients. Figure 3 View largeDownload slide Prosthetic valve display to patients. This year, patients responded strongly to the auscultation demonstration with stethoscopes. Patient guests were enthralled, ‘listening to the hearts’ of their fellow patients as well as to their own. The sound of hearts pumping with damaged valves, repaired valves, and mechanical valves was plainly audible through the stethoscopes. Guests and event facilitators were clearly happy to share the sounds of their heartbeats with others. Each event included the opportunity to share wishes, thoughts, and emotions on Red Hearts which were displayed, and which are shared with policymakers, key stakeholders, and advocacy groups (Figure 4). Figure 4 View largeDownload slide Heart demonstration by PhD Fellow Babu Mohammed. Figure 4 View largeDownload slide Heart demonstration by PhD Fellow Babu Mohammed. Two more patient events held in Africa in late 2017 (Kenya and Uganda) were modelled on the Cape Town ‘Listen to my Heart’ format of educational demonstrations and presentations, and facilitation of interactions among and between patients, researchers and clinicians. Many patients reported never having met another patient with RHD prior to coming together at the patient event. Many clinicians and researchers had never heard their patients’ stories told from such a personal, real life perspective. Importantly, most participants walked away from the events with a renewed sense of community, purpose, and advocacy for the global fight against RHD. Events to engage, celebrate, and network with PLWRHD is clearly a valuable activity in the health care community. We encourage readers to consider celebrating their own PLWRHD communities around the world in an effort to bring the faces and voices of the real people affected by this disease to the attention of policy makers, funders and the medical community so they can make informed decisions on the importance of prevention at the primary, secondary, and tertiary levels, and on how to care for PLWRHD who have progressed to advanced disease. Conflict of interest: none declared. References References are available as supplementary material at European Heart Journal online. Cardio Pulse contact: Andros Tofield, Managing Editor. Email: email@example.com Published on behalf of the European Society of Cardiology. All rights reserved. © The Author 2018. For permissions, please email: firstname.lastname@example.org. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices)
European Heart Journal – Oxford University Press
Published: May 11, 2018
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