The Power of Consumer Activism and the Value of Public Health Immunization Registries in a Pandemic: Preparedness for Emerging Diseases and Today's Outbreaks.

Public Health immunization registries and the immunization ecosystem have evolved over the past two decades to become significant population health data assets. Clinical providers and pharmacists are reporting the immunizations given to their patients to public health registries in 49 states and all territories, creating consolidated immunization event patient records. Most of these immunization events are reported through the provider's Electronic Health Record system (EHR), Pharmacy Management System (PMS), online, or through data uploads.

Immunizations: the first step in a personal health record to empower patients.

Despite the promise of better health care through information-centric patient empowerment, little progress has been made. The issue is not that the data do not exist in a useable form, nor that technologies are lacking that would enable access to this information. There are two primary challenges standing in the way of patient empowerment: (1) in the private sector there is no proven revenue model for providing this access and (2) in the public sector the standard argument is confidentiality of information.

Colorectal cancer screening - using informatics and compunetics to empower the at-risk individual.

Population-based cancer screening is most effective and cost efficient when offered through an organized screening program that incorporates all elements of the screening process, including information systems that support optimal program operation, monitoring, and evaluation. Although it is well accepted that organized population-based cancer screening programs can effectively reduce mortality, little effort has been invested in designing, developing, and implementing information systems to support these programs. This paper presents a prototype information management system for organized population-based cancer screening.

Empowering patients and researchers through a common health information registry: a case example of adrenocortical carcinoma patients and researchers.

Adrenocortical Carcinoma is a rare malignant tumor that forms in the outer layer of tissue of the adrenal gland, which is a small gland situated on the anteriosuperior aspect of the kidneys. These glands produce steroid hormones, adrenaline, and noradrenaline that control heart rate, blood pressure, and other body functions. Because this cancer affects a limited number of patients, it is referred to as an Orphan disease, which is defined as a condition that affects fewer than 200,000 people nationwide.

Applied medical & care compunetics to public health disease surveillance and management: Leveraging external data sources--a key to public health preparedness.

In today's global community the ability to prepare for a disease outbreak in order to mitigate the public health, social, and economic impacts on a community depends upon data to support the decision and response process. Data can come from a variety of sources. These sources not only include the medical and health care community, but also geographic, demographic, and socio-economic data.

Health informatics: a roadmap for autism knowledge sharing.

With the prevalence of diagnosed autism on the rise, increased efforts are needed to support surveillance, research, and case management. Challenges to collect, analyze and share typical and unique patient information and observations are magnified by expanding provider caseloads, delays in treatment and patient office visits, and lack of sharable data. This paper outlines recommended principles and approaches for utilizing state-of-the-art information systems technology and population-based registries to facilitate collection, analysis, and reporting of autism patient data.