Mobile and Web-based Healthcare Research Communities
PACeR operates a global social research networks that connect researchers with clinical sites, principal investigators, community physicians and study subjects. Employing both web-based and mobile technologies, the PACeR Research Network provides a dedicated, secure and HIPAA compliant research networking service for collaboration, communication, education, real-time standardized data collection and longitudinal surveillance of populations. Clinical investigators, hospital networks and pharmaceutical and device companies deploy research studies and create interest user groups, organized by disease, research study, medication, surgical or medical procedure or other characteristics, and are able to educate subjects and monitor and capture detailed longitudinal study data. Information can be disseminated and collected over wireless connections from cell phone, tablet, computer or biotelemetry device. Millions of patients currently participate in PACeR on-line medical communities to monitor health outcome, growth and development, drug safety & compliance, enroll in clinical research studies and share disease information with research scientists.
PACeR Research Communities versus Traditional Disease Registries & Electronic Medical Records
More than 130 million Americans live with chronic diseases and chronic diseases account for 70% of all deaths in the US.”The medical care costs of people with chronic diseases account for more than 75% of the nation’s $2 trillion medical care costs.” Disease registries are used to identify and capture information about some of these conditions, but they are most often snapshots in time that are used retrospectively to identify problems resulting from therapy, medication and to recruit for clinical research studies. Because registries tend to be static and patient health is dynamic the reliability of the information about a person’s disease, medication history and the like becomes less useful over time.
Electronic Medical Records (EMR) are now mandated by the Centers for Medicare and Medicaid for use by all hospitals and physicians and are used to record orders, medications, lab results and diagnoses for all encounters. EMR’s are primarily used to record encounter information for billing purposes. After extensive analysis PACeR demonstrated that they are not designed for scientific-method’s based research. In addition, EMR’s are location or hospital network specific. There is no standardization across healthcare networks or physician offices (they do not interoperate). People however move between many physicians and hospitals. Electronic health records are therefore of limited value for drug, device, quality, safety, standard-of-care or outcome research studies.
PACeR Networks and Scientific-method based Tools
Researchers are able to develop longitudinal research protocols for scientific-method based research data collection using PACeR’s open source cloud-based clinical research toolkit. Without having to know anything about programming, a scientist-clinician is able to build clinical study protocols, educate, consent and collect data in real-time from study subjects across the PACeR social research network for any research project.
PACeR’s social networks and clinical research toolkit are used for drug studies, drug surveillance, device safety, genomic and biomarker studies, comparative effectiveness and outcome research, hospital Meaningful Use compliance and all other forms of scientific-method’s based epidemiologic study.
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