All countries and centres who receive support from LFAC are required to provide yearly reports on how these supplies are distributed and how many children and young adults with diabetes benefit from them. LFAC is aware that country partners and health professionals who care for these young people are often working under challenging conditions with limited resources and the collection and recording of clinical data can be seen as time away from patient care. However, accurate data collection is an important investment for the future.
Why do we need data?
Accountability
LFAC is a non-government organisation that relies solely on donations. We have obligations to provide regular reports on how donated funds and supplies are used, and the impact they have.
Each supported country has an MOU (Memorandum of Understanding) that outlines reporting requirements which need to be adhered to.
Assessing support needs
Aggregated clinical data, narrative reports and pictures provide local partners and LFAC with insight into the current status of care, and identifies gaps so that these can be addressed.
Advocacy and Research
Accurate data collection provides information that can help LFAC country partners to advocate for government support. Such data can also be used for epidemiological and clinical studies which further help with advocacy, fundraising, resource allocation, and teaching and training of health professionals.
WHAT data is required?
LFAC requires the following reports from all children and young adults supported by LFAC from ALL countries at least annually:
A List or Register
An Annual Clinical Data Sheet(ACDS)
A Narrative Report describing activities, problems identified and actions taken
Some Photos and Stories of children and young adults (with permission)
Quarterly Insulin tracking forms (If receiving donated insulin)
Financial reports (if receiving funds)
Templates for data collection are sent regularly to all countries / centres. If you have any questions or concerns please contact Cecile Eigenmann, LFAC Education Manger via email: [email protected]
The FUTURE of data collection
LFAC countries are invited to join SWEET, an international network of Centers of Reference for pediatric diabetes. The SWEET database consists of 91 centers from 50 countries worldwide, who contribute to one unified anonymized diabetes database currently including more than 50,000 patients and more than 500,000 patient-visits overall.
Reasons why to join the SWEET Network:
Free software
Data evaluation, Quality assurance
Benchmarking report, international data comparison
Possibility to participate in research projects
Possibility to attend an annual SWEET meeting
Cost-free Peer Review (required to get certified as Collaborative Center or Center of Reference)
Requirements to join the SWEET Network:
Completion of an application form
Uploading data twice a year to SWEET
A small annual fee depending on country numbers and income
Countries who join SWEET are also required to send a copy of the SWEET report to LFAC on an annual basis. They will then no longer need to complete the LFAC list of patients/register and ACDS.
