Publications

    Transparency for Development Team, June 2019 

    This paper assess the impact of a transparency and accountability program designed to improve maternal and newborn health (MNH) outcomes in Indonesia and Tanzania. Co-designed with local partner organizations to be community-led and non-prescriptive, the program sought to encourage community participation to address local barriers in access to high quality care for pregnant women and infants. This paper evaluates the impact of this program through randomized controlled trials (RCTs), involving 100 treatment and 100 control communities in each country, and finds that on average, this program did not have a statistically significant impact on the use or content of maternal and newborn health services, nor the sense of civic efficacy or civic participation among recent mothers in the communities who were offered it.

    Elena Fagotto, Project on Transparency and Technology for Better Health, March 2019

    The Project on Transparency and Technology for Better Health was established to conduct comparative case studies on platforms that empower patients through information to provide an inventory and typology of initiatives. This case study takes a look at Breast Cancer Straight Talk Support, a closed Facebook community for women dealing with breast cancer and survivors. With hundreds of posts every day, the group is a safe space where women can vent about feeling scared, depressed, or lonely and receive support from women who “get them.” For many members, the group is a window into other women’s cancer journeys, which gives them perspective and a more proactive attitude to fight the disease. The community is also an important resource to ask questions on treatments, side effects, surgery and more.

    Elena Fagotto, Project on Transparency and Technology for Better Health, March 2019

    The Project on Transparency and Technology for Better Health was established to conduct comparative case studies on platforms that empower patients through information to provide an inventory and typology of initiatives. This case study takes a look at IBD Partners, a research network connecting nearly 15,500 IBD patients with over 300 researchers. Patients can contribute their self-reported health data for research by filling out surveys on their health twice a year. This way, patient-generated data feeds into an extensive database that can be accessed by researchers to conduct longitudinal studies, to connect with patients for clinical trials and for prospective studies. Patients can also use the platform to suggest research questions and vote for the most interesting ideas, generating a truly patient-driven research agenda.

    Elena Fagotto, Transparency and Technology for Better Health, March 2019

    The Project on Transparency and Technology for Better Health was established to conduct comparative case studies on platforms that empower patients through information to provide an inventory and typology of initiatives. This case study details ImproveCareNow (ICN), a network of clinicians, medical centers, patients, families and researchers working together to improve the lives of children with inflammatory bowel disease (IBD).