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Data Collection

Informed Consent

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

The use of data to predict and discover health trends has led to improved patient care, better health outcomes, and fostered research into newly identified health trends. Minimal data on the bleeding disorders population as a whole leads to gaps in knowledge and impedes health research and opportunities for more informed decision-making by patients, researchers, providers, and payers. This dearth of information can adversely impact decisions made by lawmaking, regulatory, and public policy entities about how to cure and treat bleeding disorders. Through its data collection program, HFA seeks to improve the process of valid data collection and ensure data is used to improve patient care and health outcomes.

Several issues related to data collection and patient health information are of key concern to the bleeding disorders community, these include:

  • Informed Consent – Informed consent is about giving permission with the knowledge of possible consequences, including the benefits and risks.  Use of an individual’s personal and medical data is used only in ways with which have been agreed to. An individual who is giving consent is given the opportunity to understand what they are consenting to, is in agreement and is not pressured to consent.  Patient driven, informed decision-making in the consent process is critical to people with bleeding disorders.
  • Privacy – We seek to ensure strict privacy provisions are in place and reduce any opportunity for hardship through inappropriate disclosure, discrimination or ostracism.
  • Control of Data – Appropriate controls are in place to prevent intentional or unintentional misappropriation of data once provided.
  • Disclosure – Data gathered is utilized for the purpose it was gathered for and additional informed consent is obtained for further study. Research and study results and findings for people with bleeding disorders are readily available to both researchers and participants who are volunteering for studies.

Resources

HFA CHOICE Project

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

 

Assisting and Advocating for the Bleeding Disorders Community