Data Collection

Data must provide the foundation for improved and accurate public understanding of bleeding disorders, decision-making by providers and payers, and improved care for patients. This process must include individuals with bleeding disorders and their families.

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 trends that impede 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. Privacy violation can be affected, for example, by breaches in electronic security for individual medical records and registries maintained by federal and state agencies.
• Improving patient-stakeholder consent and informed decision-making in how data are collected; how data are used for research purposes (both public and private sectors); how data are made public and used in policy making and in medical decisions to determine access, standards of care and therapies.
• Utilizing data to strengthen public knowledge of bleeding disorders and opportunities for developing thoughtful, fair policies by policymakers and payers.