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Collating & Disseminating Information

1.0 Collating and disseminating information

1.1 Mapping of current RHD stakeholders

RF/RHD control activities span from primordial prevention (like housing improvement and access to primary care) to tertiary interventions (including open-heart surgery and valve replacement). A range of government, non-government, research and implementation organizations address different components of this spectrum. Activities occur at global, regional, national and subnational levels with many interested individuals. Without a global outline of RHD control efforts and participants we risk duplication and missed opportunities for collaboration. RhEACH is working to map out the projects, programs and activities relevant to RHD around the world. We want to include everyone involved- small programs, research activities, funding agencies and new partners.
 
Please email us to be added to the list of stakeholders, make a correction or for contact details if you'd like to get in touch with one of the groups listed.

1. 2 An Atlas of RHD

One of the biggest challenges in control of RF and RHD is gathering useful information about the burden of disease, current control efforts and progress towards global goals. Disease specific atlases have been developed for a number of communicable and non-communicable issues including diabetes, tobacco control and many neglected tropical diseases. These publications are frequently cited as a tool for engaging with researchers and policy makers to achieve disease control - you can see our analysis of existing 'disease specific atlases' here. RhEACH is exploring opportunities to develop an online RHD Atlas (or, perhaps, an Atlas of Paediatric Cardiology) to provide current, reputable information about the burden and control of RF/RHD. Burden of disease data will be combined with profiles of disease control. We envisage than an RHD atlas will support advocacy efforts by profiling country level disease control projects, key individuals and sharing the stories of people living with RHD. It will also support fundraising efforts by providing a platform of information for potential supporters.
 
We would love to hear from potential partners, including

  • Researchers who can contribute published or unpublished burden of disease data
  • Sponsoring or supporting technical partners
  • Policy makers with feedback on how to make the tool more usable
  • Geographers, cartographers and map builders interested in collaborating on the projects
  • Individuals and communities willing to have their experiences with RHD profiled in the Atlas

1.3 Identifying overlaps with other disease communities

Many different 'disease communities' can contribute to control of RHD. By working together in areas of shared importance the impact of our efforts can be amplified and duplication reduced. - Cardiac and cardiovascular diseases - Paediatrics, adolescent and child health - Non communicable disease - Infectious disease - Other diseases utilizing benzathine penicillin G - Maternal health We are working on a paper to summarise these overlaps and provide some ideas for tangible collaboration at a program level. We would be very interested to hear about examples, experience or suggestions. Please get in touch.

1.4 Review articles and issue briefs

Achieving control of RF/RHD requires a multimodal approach; the complexity of the problem and the breadth of approaches to control can be overwhelming. Evidence is often limited, unpublished or difficult to connect to activities in the real world. RhEACH is producing one page 'issue briefs' to collating knowledge about approaches to RHD control that can be implemented into policy, including primordial prevention. The reviews will form the basis for developing single page policy briefs applicable to governments, media and disease advocates.

Single page issue briefs are planned for the following topics:

  • Access to benzathine penicillin G
  • Anaphylaxis and benzathine penicillin G
  • Damp housing and rheumatic fever
  • Overcrowding and rheumatic fever
  • Nutrition and rheumatic fever
  • Access to health care and rheumatic fever

We are happy to prepare issue briefs on specific topics required for local or national discussions. Please email for further information. 

1.5 RHD website

A current and comprehensive RHD website is important for:

  • Disseminating best practice
  • Sharing guidelines and local approaches
  • Providing an online 'home' for people living with RHD
  • Identifying opportunities for research collaboration

Reducing professional isolation for clinicians managing RF and RHD who often live in remote, low resource, settings We are exploring options for developing a world class RHD website to meet these critical needs We have developed a concept brief outlining some of the ideas for a website, including downloadable fact sheets - Approaches to program implementation - Education modules - Lesson plans for teachers - Evaluation framework for program implementers we want to make sure that the website meets the needs of the RHD community and we'd love your feedback about features to include and resources you need.

1.6 People living with RHD

The personal and social effects of living with RHD are considerable. Some fantastic initiatives have given voice to people living with RF and RHD, including…  One of our partners, CLAN, have pioneered a 'Framework of Action' for engaging and supporting communities with a high burden of RF and RHD. We are working with CLAN and other groups to strengthen the network of people living with RHD, ensure that the priorities of health care consumers are addressed and develop comprehensive solutions for disease control.

Some fantastic initiatives have given voice to people living with RF and RHD, including:

Peer support networks for people living with RHD have also been developed

One of our partners, CLAN, have pioneered a 'Framework of Action' for engaging, supporting and communities with a high burden of RHF and RHD. We are working with CLAN and other groups to strengthen the network of people living with RHD, ensure that the priorities of health care consumers are addressed and develop comprehensive solutions for disease control.