Fistula Data and Research: Challenges, Progress, and Recommendations

1. Data, Indicators and research sWG Sub Group Members • Prof Rene Genadry • Vinit Sharma (leader) • Rhoda Okoth (Chair person) • Ladino Suade • Armando de Melo • Barageine Justus Kafunjo (sec/Presenter)

2. What has happened During the year • No meeting for the group members- Just few e-mails exchanged and hence less done this year. • Activities : • Develop and publish a compendium of indicators but not yet done. • Fistula surveillance exercise: 8 countries in Asia have started but results not clear now. • Global fistula Mapping (facilities and service providers) on going • Research: UNFPA/JHU collaborative study; Data collection complete and Data cleaning ongoing. Validated QOL fistula questionnaire available and members encouraged to use it

3. Key challenges • No communication (intra and inter-group) despite the need for frequent interactions • No follow up meetings to assess progress. Good ideas on paper but with no real activities on ground • Lack of standardized terminologies/ definition of terms/ indicators, this affects publications. • No credible data on fistula in all countries and policy makers not demanding for it. • Lack of awareness of fistula activities among providers, communities and leaders.

4. Addressing the key challenges • Frequent communication: e-mails and updated website for working groups. • Support/promote (directly or through donors) grants to students doing research on fistula • Letters to all gov’ts: fistula notifiable, demand for data on fistula services and to include fistula in DHS, Censuses & other important country data • Need for WHO, UNFPA and ICS consensus group on terminologies • Peer review for upcoming fistula research articles • Need for national data base/surveillance systems • Countries to be reminded about the global mapping exercise

5. Best practices identified • Data base for surgeons, activities in Bangladesh- Can be replicated • Advocacy with MoH as seen in Asia hence 4 new partner countries • Surveillance exercise can be done by all partners • Coordination of all partner activities to avoid duplication. • Setting research priorities for donor agencies to fund • Sharing of research articles published to help in coordination and avoid duplication • Use of classifications in CBM as a requisite for publishing data on fistula • Link between IOFWG and local/country OFWG • Encouraging use of QOL fistula questionnaire

6. Recommendations for effective functioning of sWG • Improve on communication/ regular updates. • At least twice a year meetings to follow up on planned activities. • Need for a defined membership in each SWG to ensure continuity. • Defined agenda for meetings for SWGs • Need for research coordination/dissemination systems • Peer reviewers for journals publishing fistula articles

7. Thank You