Data collection, registries and electronic medical records are all tools that can lead to improved patient care and better health outcomes. The current lack of data on the bleeding disorders population in the United States leads to gaps in knowledge and impedes health research and opportunities for more informed decision-making by researchers, providers, and payers.
Several issues related to data collection and patient health information are of key concern to the bleeding disorders community, these include:
- Maintaining strict privacy provisions that reduce any opportunity for harm through inappropriate disclosure, discrimination or ostracism.
- Improving patient-stakeholder consent and informed decision-making in how data are: collected; used for research purposes (both public and private sectors); and used in policy and medical decision making.
Resources
Genetic Information Nondiscrimination Act (GINA) of 2008
Centers for Disease Control and Prevention (CDC) – Universal Data Collection
American Society of Hematology (ASH)
The American Thrombosis and Hemostasis Network (ATHN)
National Heart Blood and Lung Institute
Healthy People 2020 – Blood Disorders and Blood Safety
National Human Genome Research Institute
