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. Meaningful Use and health data standards (HL7) became the drivers that accelerated reporting to immunization registries and significantly improved the quantity and quality of the data. The infrastructure supporting the Immunization Ecosystem (IE) has enabled real-time compliance reporting and, more importantly, real-time patient queries. The provider community now has online access to a patient's immunization history in over three quarters of the states, and growing. This access includes a forecast of the patient's immunization gaps provided by public health decision support tools based upon the most recent ACIP recommendations. This is creating an opportunity for the provider and the patient to work together to reduce their risk of suffering a vaccine-preventable disease. This IE and the data in an Immunization Information System (IIS) are especially useful as pharmacies expand their immunization practices and create opportunities to reduce the adolescent and adult immunization gaps. In a few states, this provider-public health ecosystem has begun to extend to individuals by allowing them to access the IIS online through the use of MyIR. MyIR provides them with the electronic version of their immunization "yellow cards," recommendations for immunizations due, and the ability to print official certificates. This emerging consumer engagement creates opportunities to empower individuals to be more proactive in their family's health care. This paper builds upon early experiments to empower individuals in this ecosystem by leveraging the value of these public health data assets and trusted communications, illustrating the possibilities for engaging consumers to support reducing the impact of emerging diseases, outbreaks and the next pandemic. This paper will suggest the value of the IE and the role individuals can play within their own social networks to advance public health efforts to manage disease events. In turn, this social mission would encourage consumers to be more proactive in managing their own healthcare.

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. A typical colorectal cancer screening program was modeled for illustration of organized cancer screening workflow, key functional features were investigated, and a system infrastructure and architecture designed. The system as designed facilitates the sharing and management of information among the many stakeholders involved in the program (e.g., participant, family physician, specialist, hospitals, laboratories pharmacist). Throughout the functional design phase of this project, empowerment of the-at risk individual with access to personalized information and support was the core consideration. The leveraging of existing health records to facilitate risk profiling, and the proactive engagement and education of individuals with personalized information were considered key functional requirements of the system. The system was designed to provide participants with easy web-enabled access to view their status in the cancer screening program, and on-line resources to facilitate scheduling of activities, updating of personal profiles, and access to additional relevant information. By proactively engaging individuals, providing them with personalized information, and facilitating their involvement in the cancer screening program with easy-to-use information management tools, the likelihood of program enrollment and participation will be greatly increased.

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. The lack of a priority by either private or public health providers to empower individuals will lead to these initiatives being consumer driven. Access to immunization records through health informatics and supporting compunetics presents an easy-win opportunity to significantly empower individuals with their own health information. Scientific Technologies Corporation (STC) has been implementing and supporting immunization registries in North America for over fifteen years. As the leading expert in this area, STC has developed a process for achieving successful large-scale access to personal immunization records with minimal investment. As a first step to empower individuals with on-line access to their immunization records, the STC approach leverages the technical frameworks established for health insurance and 3rd party payer environments linking to statewide immunization information systems. The individual is provided access to their records through their insurer's health portal. This is populated through electronic exports of member immunization records as retrieved from state or provincial registries that contain provider-supplied patient records, allowing individuals to utilize these hosted services or download their provider administered records into their personal health record. Individuals have the ability to review their immunization and their family immunization histories. They have the ability to know when an immunization is due, where vaccines are available, and which vaccines minimize risks to disease. For the emerging industry of on-line personal health records, a patient's immunization record will be the single most important factor to demonstrate success for patient empowerment. It will create a roadmap to support the inclusion of other medical information.

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. Internationally, there are 5,000-8,000 such diseases affecting an estimated 55 million people. There is often limited medical intervention for many of these conditions. With a small number of patients, and a correspondingly small number of providers and researches, this disease is a candidate for establishing a shareable information system that is used by the patient, provider, and researcher. This resource empowers the patient to support their care and treatment while allowing medical providers and researches to have valuable and broad access to patient activities and behaviors that may impact their treatment. Orphan disease registries are prime candidates for establishing health information resources that support communications between patients, providers, and researchers. As a resource, this information can be used to facilitate treatment protocols to include biomarker identification, testing and monitoring of new drugs. By empowering a common community of individuals that share a common disease, the potential to accelerate research and identify improved treatment options may also increase. This paper presents a strategic plan and design for implementing Orphan disease registries within an e-health environment that specifically links patients and providers with researchers. The Adrenocortical Carcinoma Registry will be used to demonstrate the implementation and potential of these systems.

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. The ability to capture and utilize the data effectively from these types of data sources can mean the difference between a manageable disease outbreak that represents little or no threat to a community and one that causes a significant social and economic impact. As the health profession expands the applied use of information technology within the medical and health care communities, opportunities are created to expand the use of new data sources to support information based decisions. Information that can be used to provide early warning for disease outbreaks both naturally occurring or through a bioterrorist event; information that can be used to plan, analyze and respond to a disease event; information that can support a community's preparedness activities in order to minimize a public health event. This chapter illustrates how applied compunetics can be used to support health care as the public health professional responds to, and manages, naturally occurring diseases as well as emerging new disease threats. An electronic health environment (EHE) vision is presented that capitalizes on the use of a variety of environmental, medical, and health care data to support disease early warning, reporting, case and outbreak management and community preparedness.

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. Such a platform will increase treatment options and registry information to facilitate diagnosis, treatment and research of this disorder.