Article type
Year
Abstract
Background:
Patient partnership is a Cochrane priority. Consumers are engaged in all phases of the systematic review (SR) process and in promoting understanding of randomised controlled trials (RCTs) and SRs. Before RCTs can take place, however, there must be research funding, supportive government policies, data infrastructure and medical settings in which they can be executed. When completed, their findings are only meaningful to patients if they result in improved access to evidence-based, patient-centred care. Patient organisations play a leading role in creating the foundation that makes research possible and in translating research findings into action. These efforts can be especially impactful in low and middle-income countries where medical services, research infrastructure, funding and/or government support are lacking.
Objective:
To expand understanding of patient impact on research and enable effective partnerships with such organisations, with a focus on low and middle-income countries.
Methods:
The Global Alliance for Rheumatic and Congenital Hearts (Global ARCH), founded by patient and family leaders in 2017, is a network of 28 organisations in 24 countries focused on childhood-onset heart disease. Together they serve over 30,000 patients and families, the majority in low and middle-income countries. The goal is to improve outcomes through patient-led advocacy, education and promotion of research. We will present examples of patient organisation activities in low and middle-income countries that promote the foundations for research, including government advocacy, funding and infrastructure. We will then describe Global ARCH's partnership with the International Consortium of Health Outcomes Measurement as an example of translating research into action. We will outline specific ways researchers and clinicians can partner with patient organisations on research advocacy and implementation efforts, and provide resources for identifying patient organisations in high, middle and low-income countries.
Patient or healthcare consumer involvement:
This abstract is submitted by Global ARCH, representing 28 patient-led organisations in 24 countries. All activities described were led by patients and families. All but one of the abstract authors are directly affected by childhood-onset heart disease, including the presenting author.
Patient partnership is a Cochrane priority. Consumers are engaged in all phases of the systematic review (SR) process and in promoting understanding of randomised controlled trials (RCTs) and SRs. Before RCTs can take place, however, there must be research funding, supportive government policies, data infrastructure and medical settings in which they can be executed. When completed, their findings are only meaningful to patients if they result in improved access to evidence-based, patient-centred care. Patient organisations play a leading role in creating the foundation that makes research possible and in translating research findings into action. These efforts can be especially impactful in low and middle-income countries where medical services, research infrastructure, funding and/or government support are lacking.
Objective:
To expand understanding of patient impact on research and enable effective partnerships with such organisations, with a focus on low and middle-income countries.
Methods:
The Global Alliance for Rheumatic and Congenital Hearts (Global ARCH), founded by patient and family leaders in 2017, is a network of 28 organisations in 24 countries focused on childhood-onset heart disease. Together they serve over 30,000 patients and families, the majority in low and middle-income countries. The goal is to improve outcomes through patient-led advocacy, education and promotion of research. We will present examples of patient organisation activities in low and middle-income countries that promote the foundations for research, including government advocacy, funding and infrastructure. We will then describe Global ARCH's partnership with the International Consortium of Health Outcomes Measurement as an example of translating research into action. We will outline specific ways researchers and clinicians can partner with patient organisations on research advocacy and implementation efforts, and provide resources for identifying patient organisations in high, middle and low-income countries.
Patient or healthcare consumer involvement:
This abstract is submitted by Global ARCH, representing 28 patient-led organisations in 24 countries. All activities described were led by patients and families. All but one of the abstract authors are directly affected by childhood-onset heart disease, including the presenting author.