Patient Reported Outcomes in Online Communications on Statins, Memory, and Cognition: Qualitative Analysis Using Online Communities November 28, 2019
In drug development clinical trials, there is a need for balance between restricting variables by setting enrollment criteria and representing the more diverse patient population that may use a product once it is approved. Although recent policy initiatives focusing on inclusion of historically underrepresented groups are being implemented, barriers still remain. [by. Farris Timimi; Sara Ray; Erik Jones; Lee Aase; Kathleen Hoffman]
Assessment of public and patient online comments in social media and food and drug administration archival data. A pilot qualitative analysis October 10, 2019
Food and Drug Administration
To refine a method of collecting the data from various patient generated data sources to explore themes with high repeatability. FDA will acquire new insight into understanding the perspectives of patients and caregivers through analyses of multiple sources. [by: Author ChristineLee, Christopher St Clair, CDR Christine Merendac, CAPT Richardae Araojo, SaraRay, DerrickBeasley, RADM Denise Hintone]
Poster: Partnership and Progress for a Rare Disease Community–How Inspire and HNF collaborated to grow the Charcot-Marie-Tooth community and accelerate medical progress June 7, 2019
National Institutes of Health: Rare Disease Day
Three randomized controlled trials evaluating the impact of “spin” in health news stories reporting studies of pharmacologic treatments on patients’/caregivers’ interpretation of treatment benefit June 5, 2019
News stories represent an important source of information. We aimed to evaluate the impact of “spin” (i.e., misrepresentation of study results) in health news stories reporting studies of pharmacologic treatments on patients’/caregivers’ interpretation of treatment benefit.
Early Detection of Adverse Drug Reactions in Social Health Networks: A Natural Language Processing Pipeline for Signal Detection June 3, 2019
JMIR Public Health and Surveillance
Adverse drug reactions (ADRs) occur in nearly all patients on chemotherapy, causing morbidity and therapy disruptions. Detection of such ADRs is limited in clinical trials, which are underpowered to detect rare events.
Critical Choices: What Information Do Patients Want When Selecting a Hospital for Cancer Surgery? August 14, 2018
Journal of Oncology Practice
Access to comparative information on hospitals’ quality of cancer care is limited. Patients’ interest in using this information when selecting a hospital for cancer surgery and the specific data they would desire are unknown. This study gauges patients’ demand for comparative information on hospitals’ quality of cancer surgery.Access to comparative information on hospitals’ quality of cancer care is limited. Patients’ interest in using this information when selecting a hospital for cancer surgery and the specific data they would desire are unknown. This study gauges patients’ demand for comparative information on hospitals’ quality of cancer surgery.
Current genetics literacy, perspectives, and experiences of cancer, chronic, and rare disease patients and caregivers June 20, 2018
Drug Information Association
Detecting Chemotherapeutic Skin Adverse Reactions in Social Health Networks Using Deep Learning March 2, 2018
Early recognition of ADRs could substantially improve health outcomes and decrease societal costs. Internet community health forums provide a mechanism for several hundred million individuals to discuss current health concerns and may serve as a resource for computational detection of ADRs.
Understanding Disease Burden and Outcomes from the Patient’s Perspective Using Disease-Focused Internet Forum Data May 1, 2017