RHD Action

• International
• English
• Clinician - community health worker

Form 1.3 Suggested Key Informants

The Needs Assessment is a four-phase process that involves the following:

1. Situational assessment, which involves a systematic review of local literature regarding GAS, ARF, and RHD and characterisation of candidate sites.
2. Facility-based assessment, which includes reviewing clinical records, evaluating capacity to deliver care around GAS, ARF, and RHD in the site’s health facilities, and seeking an understanding of how services around ARF/RHD integrate with the rest of the health system.
3. Understanding the patient and provider experience, which uses qualitative methods to understand barriers and facilitators along the CoC©
4. Planning the intervention, which implements a rigorous process approach to mapping and dialoguing with stakeholders and then designing the intervention and also includes a monitoring and evaluation framework.

Using the NAT will require adaptation to local circumstances and resources. The tools and processes can be selected individually or as a complete set.  They will then require contextualization within each setting and will require careful planning, community participation and additional refinement during implementation. The instruments within the NAT will serve as a foundation, but must be implemented with guidance from practitioners with local expertise.

This tool is meant to be used as resources allow. It’s been designed to include desk elements, and quantitative and qualitative components. Some may not always require formal ethics approval. It is always a best practice to consult with your local Ethics Committee before embarking on any of these needs assessment activities. Tools can be adapted and utilized in different situations and will integrate with the RHD Roadmap and the TIPS framework.

We encourage you to look through the tools below, consider local applications and consult freely for assistance in applying them.

• International
• English
• Clinician - community health worker

Form 1.2 Health System Assessment

The Needs Assessment is a four-phase process that involves the following:

1. Situational assessment, which involves a systematic review of local literature regarding GAS, ARF, and RHD and characterisation of candidate sites.
2. Facility-based assessment, which includes reviewing clinical records, evaluating capacity to deliver care around GAS, ARF, and RHD in the site’s health facilities, and seeking an understanding of how services around ARF/RHD integrate with the rest of the health system.
3. Understanding the patient and provider experience, which uses qualitative methods to understand barriers and facilitators along the CoC©
4. Planning the intervention, which implements a rigorous process approach to mapping and dialoguing with stakeholders and then designing the intervention and also includes a monitoring and evaluation framework.

Using the NAT will require adaptation to local circumstances and resources. The tools and processes can be selected individually or as a complete set.  They will then require contextualization within each setting and will require careful planning, community participation and additional refinement during implementation. The instruments within the NAT will serve as a foundation, but must be implemented with guidance from practitioners with local expertise.

This tool is meant to be used as resources allow. It’s been designed to include desk elements, and quantitative and qualitative components. Some may not always require formal ethics approval. It is always a best practice to consult with your local Ethics Committee before embarking on any of these needs assessment activities. Tools can be adapted and utilized in different situations and will integrate with the RHD Roadmap and the TIPS framework.

We encourage you to look through the tools below, consider local applications and consult freely for assistance in applying them.

• International
• English
• Communities

This CVD and Development Toolkit provides heart associations and cardiology societies with the tools necessary to support national advocacy efforts. This resource can be used for everything: from helping develop your national CVD strategy, to reaching out to the media, to scheduling a meeting with the Minister of Finance. Please adapt the materials to fit your unique local situation. More materials can be found at www.worldheart.org.

• South Africa
• English
• Communities

This talk was given at a local TEDx event, produced independently of the TED Conferences. Dave explores how countless lives could be saved through using an egg cup & a cell phone app to diagnose Rheumatic Heart Disease in children.

In his talk he explores the use of dumb hardware, like an egg cup, together with smart software on a mobile phone, to detect heart disease in kids in areas where doctors are hard to find.

David is a PhD student at Oxford, working on trying to solve health issues in South Africa using low-cost technology. David spends most of his time listening to heart sounds, playing with kitchen utensils or sending people SMS-reminders to take their medication. When not doing that, he plays the bagpipes.

In his talk he explores the use of dumb hardware, like an egg cup, together with smart software on a mobile phone, to detect heart disease in kids in areas where doctors are hard to find.

• International
• English
• Clinician - community health worker

Form 1.1 Systematic Review Protocol

The Needs Assessment is a four-phase process that involves the following:

1. Situational assessment, which involves a systematic review of local literature regarding GAS, ARF, and RHD and characterisation of candidate sites.
2. Facility-based assessment, which includes reviewing clinical records, evaluating capacity to deliver care around GAS, ARF, and RHD in the site’s health facilities, and seeking an understanding of how services around ARF/RHD integrate with the rest of the health system.
3. Understanding the patient and provider experience, which uses qualitative methods to understand barriers and facilitators along the CoC©
4. Planning the intervention, which implements a rigorous process approach to mapping and dialoguing with stakeholders and then designing the intervention and also includes a monitoring and evaluation framework.

Using the NAT will require adaptation to local circumstances and resources. The tools and processes can be selected individually or as a complete set.  They will then require contextualization within each setting and will require careful planning, community participation and additional refinement during implementation. The instruments within the NAT will serve as a foundation, but must be implemented with guidance from practitioners with local expertise.

This tool is meant to be used as resources allow. It’s been designed to include desk elements, and quantitative and qualitative components. Some may not always require formal ethics approval. It is always a best practice to consult with your local Ethics Committee before embarking on any of these needs assessment activities. Tools can be adapted and utilized in different situations and will integrate with the RHD Roadmap and the TIPS framework.

We encourage you to look through the tools below, consider local applications and consult freely for assistance in applying them.

• International
• English
• Communities

Prevention might be better than cure for rheumatic heart disease

Research review by Beth Jones published on PLOS Research News.

Research Article: Watkins D, Lubinga SJ, Mayosi B, Babigumira JB (2016) A Cost-Effectiveness Tool to Guide the Prioritization of Interventions for Rheumatic Fever and Rheumatic Heart Disease Control in African Nations. PLoS Negl Trop Dis 10(8): e0004860. doi:10.1371/journal.pntd.0004860

• International
• English
• Communities

Group A streptococcal infection can cause rheumatic fever (RF) progressing to rheumatic heart disease (RHD) in children and young people. RHD causes damage to the heart valves which leads to progressive heart failure, disability, and premature death. Women with heart valves damaged by RHD are at an increased risk of complications during pregnancy and delivery.

This brief outlines rheumatic heart disease and the intersects with maternal and child health.

• International
• English
• Communities

Rheumatic heart disease causes a large burden of ill health among Indigenous Australians. More investment is needed to prevent and manage the disease, say experts. Sophie Cousins reports in a World Report in The Lancet.

For further information:
Tackling rheumatic heart disease in Indigenous Australians | The Lancet

• International
• English
• Communities

RHD Action | Consent to use images, recordings and/or documents
Rheumatic Heart Disease Action Alliance (RHDAA) acknowledges the valuable contribution made by you, your family and your child to support us in our endeavours. The works/ photos/ images/ audio recordings provided by you may be published by RHDAA (implied to include Medtronic Philanthropy, World Heart Federation and RhEACH) in documents, newsletters, displays, professional development materials, websites and on social media.

Your consent
We would like to obtain your consent before including you or your child/ren in any publication or display. In most circumstances the material will not include any personal information regarding you or your child’s identity or may include a first name only.

*Please note that where consent is not given for RHDAA to publish images/photographs, recordings, documents, etc. then RHDAA is unable to publish your material.

• International
• Spanish
• Communities

Descripción: enfermedad cardíaca reumática (RHD) mata a más de 250.000 personas cada año - la mayoría vive en regiones de bajos recursos. Esta animación describe las tres etapas por las que la faringitis estreptocócica puede conducir a la enfermedad hemorrágica del conejo. También muestra cómo RHD puede prevenirse por completo - por el tratamiento de la faringitis estreptocócica.

This animation was created and produced by WiRED International

• Timor-Leste
• Tetum
• Communities

• International
• English
• Communities

Global Status Update on Benzathine Penicillin G

Rosemary Wyber*¹, Timothy Johnson¹, Shannon Marantelli², Jonathan Carapetis^1,2

¹Telethon Kids Institute, University of Western Australia, ²University of Western Australia, Perth,

Introduction:
Benzathine penicillin G (BPG) is a WHO essential medicine and integral to global control of rheumatic heart disease (RHD). BPG is indicated for the treatment of group A streptococcal infections to prevent development of acute rheumatic fever (ARF), and as secondary prophylaxis against recurrent ARF. Stockouts and shortages of BPG have been reported worldwide. Collating these reports and understanding the global market for BPG is necessary to identify strategies for improving supply.

Objectives:
The Global Status Update on BPG describes key stakeholders in the BPG market, outlines indicators of supply and demand and articulates key concerns of clinicians. The Status Update identifies priority steps to improve global BPG supply.

Methods:
Qualitative information from key informants, industry stakeholder and procurement agencies was collated and triangulated. Indications of price and purchase intent were extracted from national purchasing bodies and global drug price guides. Clinical details on adverse reactions were extracted from pharmacovigilance programs and case reports.

Results:
A small number of industry, research and multinational stakeholders are engaged in the global BPG market. Most became aware of BPG for the treatment of syphilis; use of the drug in RHD control has received relatively little attention. Manufacturers identify shortage of active pharmaceutical ingredient as a bottleneck in BPG production. Fragmentation of the market and limited indications of purchasing intent are barriers to increasing investment or production. Technical issues, including the use of historic trial data for contemporary regulatory applications, administration of BPG injections in community settings and concerns about antibiotic resistance were also identified as inhibitors to investment. Clinicians are concerned about quality and safety of available products and perceive a high rate of adverse reactions to BPG.

Conclusion:
Echocardiography screening and other initiatives to support early diagnosis of RHD are predicated on access to affordable, high quality BPG. Multiple barriers to increasing production and supply of BPG exist. These must be addressed if ambitious RHD control targets are to be achieved. Partnerships with syphilis and sexual health communities will be required to further understand BPG supply and to present evidence of economically viable market size. Research and regulatory input to allay clinical safety concerns will be needed.

Disclosure of Interest:
None Declared

*This poster was presented at the World Congress of Cardiology and Cardiovascular Health, Mexico City, 2016

• International
• Spanish
• Communities

SWS, distribuidor oficiel InstantAtlas, habla con RHD Action.

Entrevista en espanol entre InstantAtlas y RHD Action como creando un mapa global sobre los datos de la cardiopatía reumática en un formato fácilmente accesible, utilizando gráficos, mapas y tablas.

• International
• English
• Communities

A systematic review of the lived-experiences of rheumatic heart disease of Aboriginal and Torres Strait Islanders in Australia

Timothy Johnson¹, Clancy Read*¹, Emma Haynes^1,2, Dawn Bessarab³

¹Telethon Kids Institute, University of Western Australia, ²University of Western Australia, Perth, ³ Centre for Aboriginal Medical and Dental Health, University of Western Australia, Perth

Introduction:
Rates of rheumatic heart disease (RHD) and acute rheumatic fever (ARF) among Indigenous Australians continue to be among the highest in the world. Adherence to lifesaving secondary prophylaxis remains poor. For Australian Aboriginal and Torres Strait Islander populations, life and health exist in a context of post-colonialism and its aftermath of dispossession, marginalisation, poverty and powerlessness. The Aboriginal worldview differs vastly from that of health service providers and from the biomedical model of care. Through qualitative inquiry, it is possible to explore the experiences of people living with RHD as well as how people live through and respond to those experiences as they navigate their journey through the health system. The lived experience of other chronic diseases has been more widely researched and results have informed prevention and management of respective diseases. A better understanding of the experiences of people living with RHD, their choices, options and how those factors influence their perception of knowledge can be beneficial in improving the outcomes of people living with rheumatic heart disease.

Objectives:
This study examines existing primary and secondary research to summarise the knowledge gained from qualitative inquiry on the experiences of people living with RHD. The study evaluates the need for the exploration of the lived experience of Indigenous Australians living with RHD.

Methods:
A systematic review of primary and secondary research, conducted using electronic databases.

Results:
Preliminary findings indicate a paucity of qualitative research inquiry in the field of RHD.

Conclusion:
This study forms a foundation upon which further qualitative research into the lived experience of Indigenous Australians with RHD can be built.

Disclosure of Interest:
None Declared

*This poster was presented at the World Congress of Cardiology and Cardiovascular Health, Mexico City, 2016

• International
• English
• Communities

A proposed methodology for engagement, informed consent, and governance for conducting genetic research with Indigenous communities: An Australian example

Clancy Read*¹, Dawn Bessarab², Maui Hudson³, Heather D'Antoine⁴, Ngiare Brown⁵, Joanne Garngulkpuy⁶, Elaine Maypilama⁴, Lorna Murakami-Gold⁷, Alex Brown⁸, Melita McKinnon⁹

¹Telethon Kids Institute, University of Western Australia, ²University of Western Australia, Perth, Australia, ³Te Kotahi Research Institute, University of Waikato, Hamilton, New Zealand, ⁴Menzies School of Health Research, Darwin, ⁵National Aboriginal Community Controlled Health Organisation, Canberra, ⁶Yalu Marnithinyaraw, Galiwin'ku, ⁷Australian Centre for Indigenous Knowledge and Education, Charles Darwin University, Alice Springs, ⁸South Australian Health and Medical Research Institute, Adelaide, ⁹Menzies School of Health Research, Charles Darwin University, Darwin, Australia

Introduction:
Rheumatic heart disease (RHD) is highly prevalent in Aboriginal people in Australia. Despite decades of research, the underlying genetic mechanisms for why RHD occurs are not well understood. This genetic study was conducted to better understand why some people are susceptible to RHD and others are not. Past controversy in Indigenous genetic research has raised ethical concerns about the collection, use and storage of genetic samples. An appropriately designed methodology with a focus on cultural and ethical processes for gaining informed consent for the collection and treatment of samples was therefore vital to guide the study.

Objectives:
This study; investigating the genetic association of RHD in Aboriginal communities in the Northern Territory of Australia sought to establish a range of consultative, culturally aligned and community guided mechanisms to support and ensure a robust and ethically sound approach to genetic research took place with participating Aboriginal communities

Methods:
Before individuals were approached for samples, an extensive period of Aboriginal governance, community engagement and qualitative inquiry formed stage 1 of the study. Indigenous methodology was employed to conduct five focus groups with communities, called ‘yarning circles’. Genetic and health literacy material was produced, informed by communities, to ensure consent for the collection, use and storage of samples was well informed and understood. A protocol for the long-term governance of samples was established.

Results:
This study demonstrates how preliminary efforts to address issues of relationship building and engagement assisted in developing community members’ genetic literacy and ensured that members understood what they were consenting to when giving permission to informed consent in the context of genetic research. This was critical to clarifying researchers’ responsibilities and obligations in relation to the future use of stored data and genetic samples for other research projects, and will more likely result in benefit sharing between community members and researchers.

Conclusion:
This study demonstrates that such sensitive research can be ethically and successfully conducted. It can inform a pathway for ongoing research in this field and contribute to the formation of guidelines for the conduct of genetic research with Aboriginal communities.

Disclosure of Interest:
None Declared

*This poster was presented at the World Congress of Cardiology and Cardiovascular Health, Mexico City, 2016