Dr. Tom Ferguson Speaks at MLA/CHLA Conference
Report from the First Joint Meeting of the Medical Library Association and the Canadian Health Libraries Association/ Association des bibliothéques de la santé du Canada.
Vancouver, BC, 5-12 May, 2000
Program Abstracts on the Web
by Tom Flemming
McMaster University Health Sciences Library
1200 Main Street West, Hamilton, ON L8N 3Z5
(905) 525-9140 x22321; Fax: (905) 528-3733
tomflem@mcmaster.ca
http://www-hsl.mcmaster.ca/tomflem/top.html
This article appeared originally in print in the UNYOC Newsletter
(New Series no. 71), Summer, 2000.
Librarians who went to Vancouver, BC, for the annual Medical Library Association conference recently (5-12 May 2000) and heard Dr. Tom Ferguson speak in the first plenary session on Sunday, 7 May, at 10:30 a.m., probably came away very much encouraged about the future of online health information. Sunday, 7 May, was nearly the only sunny day in a week that turned out to be cool and wet in Vancouver; the city was spectacular, nestled between the mountains and the sea, providing regular views of breath-taking beauty, but the weather did not co-operate. Nearly 2,500 attendees shivered through the week of the first joint meeting of the Medical Library Association and the Canadian Health Libraries Association/Association des bibliothéques de la santé du Canada. In addition to Dr. Ferguson, we heard about: "The Road Not Taken," from Judith Messerle (whose Janet Doe Lecture was presented by Lucretia McClure as Ms Messerle could not be present) and, in the second plenary session, about: "The Ecological Millennium: the Bottom Line," from Dr. David Suzuki, an environmental activist. The third plenary session was shared by Dr. Paul Ginsparg and Betsy Humphreys who, incorporating the conference theme in the title of their shared presentation: "Demystifying Electronic Publishing: Revelations on the Revolution in Publishing," spoke to conferees about electronic publishing and papers, focussing on PubMed Central.
Dr. Tom Ferguson was the first major speaker of the conference, and the one whose presentation was most directly encouraging and inspiring for health sciences librarians. His presentation was entitled: "Digital Doctoring: Health Online and the Empowered Medical Consumer." Dr. Tom, as he is known on his website (http://www.fergusonreport.com), began by explaining that he has been studying the use of the Internet made by what he calls: "net savvy consumers". His wife is an anthropologist, and although he has no academic credentials in that discipline, he has been "digging around" in computer communications in much the same way that any anthropologist might dig into records of societies of the past. His object has been to learn what it is that online consumers of health information are doing online. He wants to know how they "do" health; he actually concentrates on the behaviour of those who are successful in using the Internet to aid in improving their health care, sometimes, in spite of the odds.
He introduced us to the notion that there are five stages of response to technical innovations, like the Internet, and described them as: 1) ignore, 2) resist, 3) substitute, 4) innovate, and ultimately, 5) transform. Healthcare professionals, he says, have so far been stuck in stages one, two or three, at most. Healthcare consumers, on the other hand, are active in stages three, four and five, according to him. He has observed those with chronic and serious illnesses using the health and disease information they encounter and share on the Internet in radically different ways than professionals do. Dr. Tom claims not to be a futurist; he simply describes what he sees and lays it out for us to consider. It is clear that the behaviour he sees around health information on the Internet has some important implications for those of us who deal with electronic information as creators, organizers or purveyors on behalf of the public.
He claims that online consumers prefer specific answers to their own questions over general information on a topic. They like to use search engines to get to what they consider to be the heart of the matter. They commonly shun documents which approach a broad topic with well-digested and carefully balanced information; this is the text-book approach to a topic and has become known and shunned by the net-savvy, as "shovelware". Professionally developed material, sometimes prepared painstakingly by committees is often rated very low by those who have used the Internet successfully to seek information which can be used to alter their healthcare. These consumers want something more specific; they have commonly exhausted print sources of basic information before coming to the Internet and want specific information in response to their questions. They want interactivity on the net; they want to talk to others who have previously negotiated the same difficulties successfully, and they find this information on sites created by other "patients" and their supporters.
This phenomenon has lead to the growth of what Dr. Tom calls "disease tribes", which are online support communities. These groups are formed by people with similar concerns, illnesses, or disabilities. They come together on the Internet and share information, often with a very high level of understanding, out of necessity. Sometimes, the glue which sticks them together is adversity: a lack of understanding of their concerns among the professionals they have previously seen, an unwillingness to give them the treatments they want to pursue, a conviction that a particular therapeutic path often followed is not the right one. They share their successes, their work and their understanding of their common condition. Often they enlist the aid of sympathetic professionals, create content to mount on the web and invite review by experts. Some of the best of these groups, Dr. Tom notes, provide better care for each other and anyone who encounters their sites than the average professional could.
A survey reported by Dr. Tom showed that e-mail lists and listservs are very important to these support groups; good health care Web sites incorporate communication. Among heavy users of these services and sites in one study, 77% reported that the best information they retrieved from the net came from their own online group; specialist doctors were the best source of information for only 21% of those reporting, and only 2% reported that their general practitioners provided the best information they received. While information from "the doctor" is important in diagnosis and treatment, many other questions about illness can be successfully addressed by online patient helpers who are not physicians. Dr. Tom mentioned the many different health and disease sites maintained by: About.com (http://home.about.com/health), each of which has its own, knowledgeable guide, as an example of this kind of information source. He also related the story of Karen Parles, a young librarian who was unexpectedly diagnosed in 1998 with a rare form of lung cancer, who turned to the Internet for information with which to save her life. She found what she needed, got a surgeon who believed he could help her after her own doctor had told her she was unlikely to survive, and is now a leading proponent of using the Internet to help yourself when faced with devastating illness. She has become a "patient helper" of a very high order, without a medical degree (http://www.lungcanceronline.org/).
According to Dr. Tom, the roles of doctor and patient are changing as knowledgeable patients get access to good health information on the Internet. Many patients are now in the position of being able to share information with their doctors that the professional has not previously encountered. Many are teaching their doctors about online health by bringing their findings into discussion with their physician. Some doctors welcome this sort of behaviour, while others do not, but it is easy to get second opinions on the Internet right now, and patients who meet resistance in their doctors are quite likely to make use of sites like that of Karen Parles. Another of Dr. Tom's examples is the site of Dr. Alan Greene (http://www.drgreene.com/), a pediatrician who believes that he should share what he knows about medicine and health with anyone who wants to know. Dr. Greene has developed a new version of the Hippocratic oath, called the: "Millennium Health Oath" in which he explicitly promises to share what he knows with anyone who can benefit from it.
A site actually providing second opinions is: America's Doctor.com (http://americasdoctor.com/) whose tag line is: Real doctors. Real answers. Real time. 24 hours a day. The emphasis here, Dr. Tom points out, is on the professional as coach, rather than as diagnostician or clinician. The doctors available for consultation on this site take questions and offer information, but do not diagnose or treat anyone on the Internet. They perform a valuable service to people looking for second opinions, or to anyone wanting first-hand information about health or healthcare. The professional as a coach plays a different role than the clinician. The clinician diagnoses and treats by seeing patients; the coach talks to people who want to know something, and does not perform the tasks of the clinician. Many other professionals can fill this role of coach, or patient helper. Nurses have done so over the telephone for many years in some places. On the About.com sites, and in many other places, non-physicians are very successfully playing the role of coach. Why can't librarians also expect to serve in the role of coach when health information is required? Sometimes, Dr. Tom pointed out, the role of the coach is to help the patient find a clinician quickly, at other times, the coach can provide other equally important services in the healthcare arena to a patient with a question. In the near future, we may find online businesses interested in hiring librarians to assist in the regard.
The contemporary net savvy consumer has a view of health that differs from that of the old-time physician. No longer is the physician at the centre of the model, handing out pills and controlling healthcare institutions. In the new patient's view, it is the patient who finds herself at the centre, consulting here, there and everywhere it is useful to go to get the information or services she feels are important to her well-being. Health care is likely to become more and more definitely "lay care", while disease care will remain dominated by professionals as the Internet becomes ever more accessible and consumers avail themselves of what they need in order to manage their health.
Dr. Tom concluded with some words of advice for physicians who want to prepare for the future, based on his observations of net savvy consumers. It will be important for physicians to survey their patients about their e-mail ability and interest. Some will want to be contacted in that fashion and to communicate via e-mail; others won't. Doctors should learn from patient online experiences, supporting and acknowledging the skills of the "smart" ones. They should develop their own lists of "best sites" for their patients and learn about support groups/sites for those with conditions they see frequently. Doctors should seek feedback from computer-active patients on their current and future delivery of online professional services, and learn the dangers of not offering online access. In all of this, there is great opportunity for librarians with online skills and the inclination to use them in furthering health and healthcare. Close observation of the best practices in the present realm of online health is one way to ensuring a healthy information future.