Person:

Fagotto, Elena

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.

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).

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.