The importance of the patient voice in vaccination and vaccine safety-are we listening?

Much has been written about the patient-physician relationship over the years. This relationship is essential in maintaining trust in the complex arena of modern diagnostic techniques, treatment and prevention, including vaccines and vaccine safety. However, a great deal of this material was written from the viewpoint of clinicians and academics. The patient voice may be positive or negative, fragmented or complex. Information sources are weighed and treated differently, according to the value system and risk perceptions of the individual. In post-trust societies, when people have less confidence in health authorities, communication needs to be more than a paternalistic top-down process. Notions of empowerment and individual patient choice are becoming crucial in medical care. The 'voice of the patient', which includes healthy individuals receiving vaccines, needs to be heard, considered and addressed. With respect to childhood immunizations, this will be the voice of the parent or caregiver. The key to addressing any concerns could be to listen more and to develop a communication style that is trust-based and science-informed. Regulatory agencies are encouraging clinical and patient-reported outcomes research under the umbrella of personalized medicine, and this is an important step forward. This paper attempts to reflect the paradigm shift towards increasing attention to the patient voice in vaccination and vaccine safety.

The Standardization of Uveitis Nomenclature (SUN) Project. Development of a clinical evidence base utilizing informatics tools and techniques.

BACKGROUND: Given the recent increased focus on evidence-based medicine, it is critical that diseases and syndromes have accurate and complete descriptions, including standardized and widely accepted terminologies. Standardizing these descriptions and terminologies is necessary to develop tools such as computerized data entry forms and classification criteria. This need is especially true for diseases that are relatively uncommon, such as uveitis. OBJECTIVES: To develop a standardized and internationally accepted terminology for the field of uveitis. METHODS: The Standardization of Uveitis Nomenclature (SUN) Working Group (WG) is an international group of 79 uveitis experts from 18 countries and 62 clinical centers. Initial terminology was developed utilizing a "modified" green field approach, which was enhanced through web-based surveys and teleconferences via a "modified" Delphi technique. Terms were mapped provisionally into ontologic dimensions for each syndrome. The Working Group then met and utilized nominal group techniques as a formalized method of finalizing the mappings. RESULTS: Mapping of terms into dimensions to describe 28 major uveitic diseases was confirmed using nominal group techniques (achieving super-majority consensus) for each of the diseases at a meeting of the entire WG. CONCLUSIONS: The SUN WG utilized an informatics-based approach to develop a standardized and internationally accepted terminology for the uveitides.

Healthcare 2020: the new rules of society.

Health Management Technology invites its readers to look ahead 20 years at IT and healthcare issues with Russell C. Coile Jr. and Brett Trusko of Superior Consultant Company, Inc. This series, titled Healthcare 2020: Bringing the Future into Focus, represents two futurists' views of the new millennium. Over the next several months, HMT will review predictions of the changes in healthcare in the first part of the 21st century. This second article, The New Rules of Society, discusses the drivers for changes in social norms, how various generations will handle the challenges of the next century, and how technology may affect those challenges and changes. Each of the ensuing articles will examine how healthcare will be affected, both directly and indirectly, by changes in society, politics, technology, local economics, and the ever-more-important global economy.