Quality Management, Certification and Rating of Health Information on the Net with MedCERTAIN: Using a medPICS/RDF/XML metadata structure for implementing eHealth ethics and creating trust globally

MedCERTAIN (MedPICS Certification and Rating of Trustworthy Health Information on the Net, http://www.medcertain.org/) is a recently launched international project funded under the European Union's (EU) "Action Plan for safer use of the Internet". It provides a technical infrastructure and a conceptual basis for an international system of "quality seals", ratings and self-labelling of Internet health information, with the final aim to establish a global "trustmark" for networked health information. Digital "quality seals" are evaluative metadata (using standards such as PICS=Platform for Internet Content Selection, now being replaced by RDF/XML) assigned by trusted third-party raters. The project also enables and encourages self-labelling with descriptive metainformation by web authors. Together these measures will help consumers as well as professionals to identify high-quality information on the Internet. MedCERTAIN establishes a fully functional demonstrator for a self- and third-party rating system enabling consumers and professionals to filter harmful health information and to positively identify and select high quality information. We aim to provide a trustmark system which allows citizens to place greater confidence in networked information, to encourage health information providers to follow best practices guidelines such as the Washington eHealth Code of Ethics, to provide effective feedback and law enforcement channels to handle user complaints, and to stimulate medical societies to develop standard for patient information. The project further proposes and identifies standards for interoperability of rating and description services (such as libraries or national health portals) and fosters a worldwide collaboration to guide consumers to high-quality information on the web

How New Subscribers Use Cancer-Related Online Mailing Lists

BACKGROUND: Online cancer-related support is an under-studied resource that may serve an important function in the information seeking, care, and support of cancer patients and their families. With over 9.8 million cancer survivors (defined as anyone living with cancer) in the United States alone and the number growing worldwide, it is important to understand how they seek and use online resources to obtain the information they need, when they need it, and in a form and manner appropriate to them. These are stated cancer communication goals of the US National Cancer Institute. OBJECTIVES: Our purposes are to (1) present background information about online mailing lists and electronic support groups, (2) describe the rationale and methodology for the Health eCommunities (HeC) study, and (3) present preliminary baseline data on new subscribers to cancer-related mailing lists. In particular, we describe subscribers' use of mailing lists, their reasons for using them, and their reactions to participating shortly after joining the lists. METHODS: From April to August 2004, we invited all new subscribers to 10 Association of Cancer Online Resources mailing lists to complete Web-based surveys. We analyzed baseline data from the respondents to examine their perceptions about cancer-related mailing lists and to describe how cancer patients and survivors used these lists in the period shortly after joining them. RESULTS: Cumulative email invitations were sent to 1368 new mailing list subscribers; 293 Web surveys were completed within the allotted time frame (21.4% response rate). Most respondents were over age 50 (n = 203, 72%), white (n = 286, 98%), college graduates (n = 161, 55%), and had health insurance (n = 283, 97%). About 41% (n = 116) of new subscribers reported spending 1 to 3 hours per day reading and responding to list messages. They used the mailing lists for several reasons. Among the most frequently reported, 62% (n = 179) strongly agreed they used mailing lists to obtain information on how to deal with cancer, 42% (n = 121) strongly agreed they used mailing lists for support, and 37% (n = 109) strongly agreed that they were on the mailing lists to help others. Smaller proportions of new subscribers strongly agreed that others on the mailing lists had similar cancer experiences (n = 23, 9%), that they could relate to the experiences of others on the lists (n = 66, 27%), and that others on the list gave them good ideas about how to cope with cancer (n = 66, 27%). CONCLUSIONS: Cancer-related online mailing lists appear to be an important resource, especially for information seeking but also for support of cancer survivors. These were the primary motivators most members reported for joining mailing lists. The modest proportion of subscribers who strongly agreed that they could relate to others' cancer experiences (as well as similar responses to other process questions) is undoubtedly due at least in part to the short duration that these subscribers were involved with the mailing lists. Emerging data, including our own, suggest that mailing lists are perhaps under-used by minority patients/survivors. These preliminary data add to a growing body of research on health-related online communities, of which online mailing lists are one variant

Evidence-based Patient Choice and Consumer health informatics in the Internet age

In this paper we explore current access to and barriers to health information for consumers. We discuss how computers and other developments in information technology are ushering in the era of consumer health informatics , and the potential that lies ahead. It is clear that we witness a period in which the public will have unprecedented ability to access information and to participate actively in evidence-based health care. We propose that consumer health informatics be regarded as a whole new academic discipline, one that should be devoted to the exploration of the new possibilities that informatics is creating for consumers in relation to health and health care issues