SPECIAL REPORT: e-Patients Changing Doctor-Patient Relationships Empowering cancer patients to use the internet, fostering global cooperation, and teaching people to recognize quality websites were key issues at the 2nd International Conference on Cancer on the Internet. Reported by: Mary Batten Cancer patients who use the internet to obtain health information – also called e-patients – are changing the traditional relationship between doctors and patients and challenging the way medicine is practiced. Internet-savvy patients are arriving at their doctors’ offices more well informed than any other generation of patients. However, there is a great “digital divide” between those who have access to the internet and those who do not. Most cancer patients live in developing countries, where poverty, lack of education, and language barriers place them at a technological disadvantage. Overcoming the digital divide to help underserved populations use the internet to obtain optimal cancer care was a major goal that emerged from the 2nd International Conference on Cancer on the Internet, held at Rockefeller University, New York City, September 13-14, 2004. The two-day conference, sponsored by the European School of Oncology (ESO) with partial support from the American-Italian Cancer Foundation, drew some 150 participants from 13 countries. Building on the statement of purpose from last year’s conference, the participants worked toward drafting actions to achieve some ambitious goals: (1) promoting standards for website content; (2) overcoming language barriers; (3) promoting prevention and public health; and (4) forming innovative global partnerships to provide internet access to more people. “We have a paradox, a global technology that seems to have to be implemented at a very local level,” said Professor J. Gordon McVie, MD, FRCP, FRCPS, FRCSE, of Glasgow University, Scotland, and one of the conference co-chairs. Bridging the Digital Divide According to Joan Dzenowagis, PhD, Project Manager of the United Nations Health InterNetwork, World Health Organization (WHO), information and communications technologies (ICT) “have brought profound opportunities and potential for worldwide advancement towards improving health, especially for those who are poor.” But there is a great discrepancy in usage. “Equity is our biggest challenge,” Dr. Dzenowagis said. She pointed out that high-income countries (Canada and the U.S., Europe, Australia, Japan, and New Zealand) have only 16 percent of the world’s population and seven percent of the disease burden, but 89 percent of health spending and 94 percent of internet hosts. In contrast, low-income countries (developing Asia-Pacific, Africa, and Latin America) have 84 percent of the world’s population, 93 percent of the disease burden, but only 11 percent of health spending and six percent of internet hosts. As an example of what is possible, Dr. Dzenowagis described a pilot project in India involving partnerships between WHO’s Health InterNetwork and journal publishers in two Indian states, Karnataka and Orissa. The project goals were to establish and analyze the use of ICT in primary health centers. This project proved that it was possible to provide computers and internet services even in remote rural communities. More than 300 public health personnel were trained in internet skills. People everywhere can learn to use the internet if they receive training and computers. Anes Pasic, MD, and his colleagues from the Institute of Oncology, University of Sarajevo, Bosnia and Herzegovina, surveyed 300 cancer patients and found that less than five percent (one in 16) were using the internet for cancer information. Translating content into the local language was the first priority. Then Dr. Pasic and his colleagues created a website to provide easy access to cancer information. Obtaining computers for patients was their biggest problem. This was solved by setting up a room at the Institute where patients could use the few available computers to access the internet. In the United States, a demonstration project involved consumer and provider workshops in both English and Spanish over a nine-month period among underserved populations in Harlem, New York. According to Rosemarie Slevin Perocchia, RN, MEd, Director of the National Cancer Institute’s Cancer Information Service of New York, some 256 African American and Hispanic residents participated in the workshops. At the end of the project, 95 percent reported knowing more about using the internet for cancer information, and 79 percent reported knowing how to judge the reliability of website content. As part of the project, a portal-like website (CancerInfoNet.org) was created to help people find health information more directly. Exploring the Universe of e-Net Consumers Tom Ferguson, MD, of the Pew Internet & American Life Project and host of doctom@doctom.com, summed up findings from a recent Pew e-patient survey (Nov/Dec 2002): Eighty percent of U.S. internet users—half of adult Americans—have searched online for at least one of the 16 major health topics included in the Pew e-patient survey. Many clinicians have seriously underestimated the benefits and overestimated the risks of online health resources for patients. Online support groups have become an important new healthcare resource—especially for those with serious, complex, fast-changing, or rare conditions. Clinicians, researchers, and patients should realize that we are witnessing an important reconfiguration of medical knowledge and a shift in medical power. e-Patients can help us heal healthcare Well people make up the largest group of health information seekers, but people with acute illnesses and chronic conditions are the heaviest users of health websites. According to Dr. Ferguson, the “acutes” make up between five and 10 percent of the U.S. population but account for 50-60 percent of internet usage for health information. e-Patients usually obtain a lot of information and then go to their doctors for validation. Sometimes, these patients even come up with a diagnosis that their doctors might not have considered. Information is empowering for patients and well-informed patients save doctors a lot of time explaining basic information. Both patients and doctors can communicate on a higher level. Dr. Ferguson pointed out that on some websites created by patients, there are “patient experts” who know more than many oncologists about their disease, particularly in the case of rare diseases. To critics who warn that consumers might harm themselves by using health information from the internet, Dr. Ferguson pointed out that “It may be as much as 10,000 to 100,000 times more hazardous for know-nothing patients to walk into a doctor’s office and do whatever they are told” than it is for them to learn all they can about their medical condition on the internet. During the 10 years that medical information has been online, “there have been deaths of two patients and two dogs,” Dr. Ferguson said. Although increasing numbers of patients are using the internet to obtain health information, fewer than five percent of doctors in the U.S. use e-mail to correspond with patients. This situation might be changed if doctors could be released from liability of providing information to patients by e-mail and if they were reimbursed for the time spent on e-mail communications. Interestingly, two presenters, David Gustafson, PhD, research professor at the University of Wisconsin-Madison, and director of the National Cancer Institute designated Center of Excellence in Cancer Communications, and Gilles Frydman, founder of the Association of Cancer Online Resources (acor.org), both became involved with internet projects after their wives were diagnosed with breast cancer. Dr. Gustafson, however, presented a less optimistic view of patients’ use of the internet. “We’ve got potential here, but we’ve got a long way to go,” he said. In a 20-week study of the impact of the internet on women with breast cancer, Dr. Gustafson and his colleagues found that people were spending most of their time using e-mail to write to their grandchildren. But Frydman said that a growing number of doctors have become patients and many say they owe their lives to getting help from other patients online. Karen Parles, a lung cancer survivor who founded the Lung Cancer Online Foundation ( lungcanceronline.org), said that doctors should know what websites their patients are visiting. It would be helpful, she said, if doctors would recommend internet sites they consider reliable to patients. Empowered e-Consumers The impact of empowered e-consumers cannot be overestimated. In her keynote address, “Harnessing the Power of the Internet in the Fight against Cancer,” Kay Dickersin, PhD, professor at Brown University Medical School, Providence, RI, Director of the United States Cochrane Center, one of the founders of the National Breast Cancer Coalition (NBCC), and an 18-year breast cancer survivor, said that medical practice has to be a “two-way street” between scientists and consumers. Through the internet, patients now have access to the same information that their doctors have. “This access has created a new dynamic between provider and patient,” she said. Computer technology and the internet have changed the way health professionals manage, disseminate, and access information within their own community. These changes, Dr. Dickersin said, “have paved the way for the development of evidence-based healthcare.” She defined evidence-based healthcare as a “combination of the best available research evidence, clinical expertise, and patient values as a basis for clinical decision making.” This approach is taken as a “given” by most lay people. Dr. Dickersin is involved in forming a coalition of advocacy groups interested in evidence-based healthcare. The mission of the coalition is to improve decision-making about health by establishing universal access to evidence-based healthcare information. “I believe consumer activists can change the world,” she said. On the final day of the conference, co-chair Alex Jadad, MD, DPhil, FRCPC, Director of the Centre for Global eHealth Innovation, University of Toronto, Canada, said that knowledge from the internet should be viewed as an enabler and not as an end in itself. For the coming year, participants will focus on developing internet health information as a global resource, promoting standards for e-health, developing public health initiatives. “Sharing best practice is key,” said conference coordinator Kathy Redmond, MSc, RN, of the European School of Oncology, Milan, Italy. Reported by Mary Batten Editor in Chief Breastlink.org The Breast Cancer Care & Research Fund 12400 Wilshire Blvd., Ste. 200 Los Angeles, CA 90025 USA Phone: 310-207-0209 FAX: 310-207-1584 Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. Support our work with any size DONATION - see left side of any page - for how to donate. You can help raise awareness of CAM.