The purpose of an international textbook on epilepsy is to educate as many people as possible about the field of epilepsy, thus enhancing the care of those with this condition. The ability of those working in the field to provide information to each other, their patients, and their patients’ families and to the community at large is an important role. This means not only giving information, but also interpreting, comparing, and objectively evaluating the information and its sources. How this is accomplished is constantly changing. The ability to obtain and evaluate new information is critical to the clinician working with epilepsy. Today’s clinicians have limited time to read journals and attend out-of-town meetings, yet they have increasing demands to document ongoing educational credits (CMEs). The sources for new information have changed from the time when the physician depended on scientific journals for the main source to the present, when there are many resources available. Industry is now playing a larger role in the information transfer process, and the ability to evaluate the objectivity of this for the health care provider becomes necessary.

The role of information transfer or dissemination affects all persons in the health field. This service is necessary for the ongoing education of physicians, scientists, physicians- and scientists-in-training, medical students, nurses, other health care providers, patients, their families and the community at large. The means for providing this service vary depending on the group that is involved and the specific goal of the information transfer. Technology advances have improved the way that information may be disseminated. Today, larger portions of the population are computer literate and have access to computers. Information provided via this means may be able to reach larger numbers of people.

The physician as an educator has a role in the information transfer process. In the past, most information was provided through written materials (books, journals) and lectures and seminars. Thus, information was often limited to only those within the medical field and was not readily available to lay people and the community at large. Currently, the means of information transfer include not only books, journals, and seminars, but also peer-developed guidelines for evaluation and treatment of specific diseases, Web-based audio/video seminars, online information with detailed discussions of disease processes, video presentations of surgical procedures, and active support groups for many chronic diseases.³

It is important for the treating physician and other health care providers to be knowledgeable about the current social and cultural issues pertinent to the populations that they treat. This means being able to apply these issues to the process of information transfer. Information and means of delivery that are acceptable and appropriate for one population may be totally unacceptable for another.

The dissemination of new research in the epilepsy field is critical to the quality of care for patients with epilepsy. This transfer requires the ability to provide health care providers access to information on new diagnostic tools, technology, and treatment options for patients once they have been evaluated as safe and available. This transfer also requires providing the interpretation of this research to the health care provider and the public.

The role of this chapter is to provide the reader with information about information transfer concerning epilepsy, ways of dissemination, self-education, the role that Health Insurance Portability and Accountability Act (HIPAA) regulations play in this information transfer, and ways of evaluating the effectiveness of this transfer.

Epilepsy is a chronic condition affecting 2.7 million people in the United States and 50 million people worldwide.⁵⁵ It affects individuals of all ages, from the newborn to the elderly; 4% of individuals who reach the age of 85 years will have developed epilepsy. Many of these people will be cared for by health care providers who are not epileptologists and whose primary training in epilepsy consists of what they learned during their educational years in medical school and residency. A report by the National Institute for Clinical Excellence (NICE) in the United Kingdom noted epilepsy misdiagnosis rates of 20% to 31%.³⁷ This report cited the financial impact of these misdiagnoses as £160,125,000 ≠ British pounds, total cost. Krauss et al.³⁶ reviewed stories published in the media concerning epilepsy. They found that 31% of the stories contained errors; many of these were inaccurate reports on the science of epilepsy. Even physicians and pharmaceutical spokespeople provided incorrect information concerning drug treatments. These facts emphasize the need for education and dissemination of information to treating physicians and the public.

The National Center for Chronic Disease, Prevention and Health Promotion in the United States gathered experts in the field of epilepsy to develop a public agenda. This meeting led in 1997 to the first major public health conference on epilepsy, Living Well with Epilepsy, and the collaboration of multiple organizations in the United States with defined goals that included the following:

A second conference, Living Well with Epilepsy II, was held in 2003 to revisit the goals set by the first conference and develop new strategies for improved awareness. The organizers noted that there was still a lack of awareness concerning the seriousness of epilepsy and available treatment options. This lack of information involved all segments of society, including health care providers, patients with epilepsy, and the general public.¹⁰ One of the charges from this conference was to address self-management and assure that those with epilepsy have the information and support needed to manage the condition and its treatment.

Adult learners have different styles and needs for learning. As students, many of us quickly realized which manner of learning works best for us. Most of us experienced the lecture format as we passed through our educational programs. This method involves listening and comprehending and then processing the information for future retrieval. For some this is easy, whereas for others it is not. For some, the process of note taking enhances learning skills with this method. Others find that what they read and visualize leads to better learning and information retrieval. In the field of health care, learning has often been by demonstration and discussion. Technology has added another dimension to learning tools with the development of audio/video formats. Many lectures today are enhanced with digital slides, audio, and/or video. Another new tool that lends itself to the learning process is the ability to access information over the Internet. All of these methods are applicable to all those who need to learn about epilepsy: medical students, physicians-in -training, physician/specialists, nurses, other health care providers, researchers, patients, family members/caregivers, teachers, employers, and the public. For each of these groups, one or more of the methods may be applicable to the learning process.

Traditionally, information transfer and education have been via didactic lectures and bedside demonstration. The younger generation of students and physicians is very technology savvy and uses computers and other technologies easily. They have grown up using computers for most of their educational years and find that information accessible via this mode is to their liking. They incorporate this into other modes of information storage such as handheld devices (personal digital assistants, PDAs). Their learning modes are often different from those of their senior physicians. They are more comfortable in obtaining information electronically than from textbooks, and read this information off computers. They may be less likely to subscribe to printed journals in the future than this generation of physicians.

Time constraints of resident hours in the United States have changed the ways of educating residents and even medical students. There is often less bedside teaching than in the past. Within medical schools there is a renewed interest in providing quality education. Some schools have established academies of medical educators to advance the mission of education.³³ Although initial evaluations of these academies show that schools recognize teaching efforts by their faculty members and promote them for these efforts, it is unclear what the outcome is relative to student learning.

Patients, families, and other caregivers traditionally depended on their primary physician for information concerning medical status and treatment. A family might have had a general health care book on the bookshelf at home. Much of their information often came from friends or other family members. The patient accepted what was said to him or her and did not question the treating physician. Medicine has changed and now encourages the patient and family to participate in the care as an active member of the team. The availability of information through various media contributes to this participation. The use of the Internet to access information has increased patient knowledge but has also contributed to patient confusion about which treatment option may be the best. Kind et al. studied the availability of computer and Internet access in a low-income urban population in the United States.³⁵ In a survey of 260 people they found that 58% had access to a computer and 41% had home Internet access. Ninety-two percent of those surveyed indicated that they would like to discuss information on the Internet with a health professional. A Harris Poll from 2003 surveying Internet use reported that 67% of all adults have been online and that 57% use the Internet at home.³⁰ The estimate for European usage is 35.5%, and for worldwide usage it is about 15.2%.⁴² Harrisinteractive surveyed patients in four countries (United States, France, Germany, and Japan) in January 2002.²⁸ This report noted that those surveyed in United States and Japan were most concerned about using Web sites not based in their own countries. Americans and Japanese were the most likely to purchase drugs online if they were available from pharmaceutical companies.

Patients and their families desire information about their health problems and treatment. This information contributes to improved compliance with medication, better relationships with health care providers, and a more positive outlook about the patients’ medical problem.^{27,38,48,49,51,52} The Healthy People 2010 Information Access Project is a collaboration of U.S. government agencies, public health organizations, and health science libraries to assist the public health workforce find and use information effectively.^54,55 A study by Deber asked whether patients wanted their physicians to do the problem solving and whether they wanted to be involved in the decision making.¹⁵ Most of the patients wanted the physician to do the problem solving, but a significant percentage wanted to be involved in the decision making part of the process. Deber discussed the problems that occur with patient education, which included the following issues: (a) the importance of the manner in which information is presented; (b) the potential for overwhelming the patient with large amounts of information; (c) the possible confusion for the patient of conflicting treatment options; and (d) the variability in quality of information, its completeness, and its accuracy.