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What e-Patients Do Online: A Tentative Taxonomy

There has been a good deal of discussion to date as to whether and how patients should use the Internet for health purposes. But we know surprisingly little about the kinds of things e-patients actually do when they go online.

Over the last few months, I've asked a number of colleagues about the various types of e-patient activities they're aware of. Based on these conversations, and on my own observations, it appears that e-patients are currently operating in the following ten domains:

Level 1. e-Patients Search for Health Information
Seventy-three million American adults currently use the Internet to look for information on their health concerns. Four out of five of their online sessions begin with a search engine. Patients give themselves online crash courses on their newly-diagnosed diseases and disorders. They prepare for doctors' appointments, and look up information on the drugs and other treatments that their doctors recommend. They look for new ways to control their weight. But above all, they search for information that might help others. According to a recent Pew Internet & American Life survey, more e-patients search for medical information for friends and family members (81%) than for themselves (58%).

Level 2. e-Patients Exchange e-Mail with Family Members and Friends
Online patients reach out via e-mail to those they know and love, reporting on their health problems and concerns, and seeking information, advice, and support from their personal network of friends and family members. Their loved ones typically respond with sympathy, understanding and support. They recommend specific resources: doctors, treatment centers, Web sites, books, and support groups. They refer e-patients to "second-level" contacts, e.g., another friend who knows about their concern. And they use e-mail to coordinate face-to-face visits and assistance.

Level 3. e-Patients Seek Guidance from Online Patient-Helpers
When faced with a new diagnosis of a serious medical problem, e-patients may seek out and communicate with an experienced online self-helper with the same condition, e.g., the Webmaster of a site devoted to their concern. There are thousands of these condition-specific online patient helpers on the Internet, and they are not difficult to find. Patient-helpers can usually recommend the best online resources for their condition. And they typically provide a type of uniquely practical and reassuring "been-there-done-that" advice that may be difficult or impossible to obtain elsewhere.

Level 4. e-Patients Participate in Online Support Groups
Many e-patients facing serious medical challenges participate in Internet support communities for their condition. These online groups, each devoted to a single medical topic (e.g., breast cancer or depression), usually communicate via postings on Web-based forums or electronic mailing lists. Participants share their thoughts, feelings, and experiences, and ask and reply to questions. Group members share their personal stories and experiences. They also exchange information on medical studies and clinical trials, discuss current treatment options, and recommend treatment centers and professionals with special expertise in the shared condition.

Level 5. e-Patients Join with Other Online Self-helpers to Research their Shared Concerns
The members of some Internet support communities organize themselves into online work groups, reviewing the medical literature on their disorder and providing lists of Frequently Asked Questions (FAQs) for the newly diagnosed. Some online support groups conduct informal research on their shared concerns. And a few have developed and carried out their own formal research studies-or have partnered with professional researchers to conduct medical research, with group members serving as research subjects.

Level 6. e-Patients Use Online Medical Guidance Systems
At some sites, e-patients can type in the names of all the drugs they are currently taking and receive a report of all possible drug interactions. At others, they can read reviews of a drug their doctor has proposed, written by dozens of patients who have actually used it. There are sites where patients can answer a series of questions about their symptoms and receive a listing of possible diagnoses-along with a list of the medical tests and observations that could help them decide which might be most likely. And there are a number of online physician directories where e-patients can find detailed information about individual doctors and hospitals, e.g., patient evaluations, surgical success rates, and reports of malpractice settlements. I have come to think of such sites as early prototypes of what my colleague Richard Rockefeller has called medical guidance systems-IT systems that use computing power to help e-patients make good medical decisions. In the future, such systems could make it possible for e-patients to play an even more knowledgeable and responsible role in contributing to their own medical care.

Within these first six levels, e-patients operate primarily in the world of lay medicine and self-managed care, with little or no involvement with health professionals. The following four levels involve interactions between e-patients and health professionals.

Level 7. e-Patients Interact with Volunteer Online Health Professionals
Online patients sometimes send their e-mailed questions to health professionals they have found on the Internet. Or they may visit Web sites (e.g. drgreene.com or drweil.com) at which physicians or other health professionals offer to answer visitors' medical questions. Hundreds of health professionals currently provide such services. And many sites (e.g., www.goaskalice.columbia.edu) list hundreds of previously-asked questions and answers in a searchable or browsable format.

Level 8. e-Patients Use the Paid Services of Online Medical Advisors and Consultants
Some e-patients take advantage of the online-only services now offered by a growing number of professionals: They may pay a physician or a nurse to answer their e-mailed questions. They may seek an online second opinion from a physician specializing in their condition. They may sign up for a series of e-mailed counseling sessions with an e-therapist. They may employ the services of an online medical researcher. Or they seek the advice of an online personal trainer, nutritionist, or weight loss coach. And since Level Eight medical professionals do not require face-to-face contact, they can offer their services to anyone with an Internet connection.

Level 9. e-Patients Engage in Electronic Conversations with their Local Clinicians
Growing numbers of e-patients exchange e-mail with their local brick-and-mortar physicians. The content of these communications frequently resembles that of a provider-patient phone call. Patients ask questions to help them prepare for, or follow up on, a clinical visit. But e-mail is more convenient and less time-pressured. So e-patients needn't worry about interrupting their busy doctors. Patients who communicate with their doctors via e-mail may find it easier to pose thoughtful questions, introduce new topics, and report on the results of their online searches. And some providers now offer more sophisticated online patient services, e.g. threaded patient-physician messaging, online advice nurses, online support communities, shared access to the patient's electronic medical records, online appointment scheduling, and online prescription refills.

Level 10. e-Patients Receive One-way Electronic Messages from their Clinicians
Some health professionals use the Net to send their patients unrequested messages that are not interactive, e.g., targeted suggestions for behavioral change, or patient education materials of the doctor's choosing. In most cases, the effectiveness of these offerings can be increased by presenting them in an "opt-in" manner, by adding a "talk back" option, or both, moving the interaction to Level Nine. While such one-way communications may be acceptable to older or less sophisticated patients, some experienced e-patients think of unsolicited one-way messages as spam and may find them offensive.

This ten-level schema, preliminary as it is, may serve as a helpful guide for understanding the emerging world of the e-patient: When faced with a medical concern, they first attempt to manage it on their own, reaching out to Web sites and to friends and family for information and advice.If more help is needed, they may look for knowledgeable online self-helpers, support groups, medical guidance systems, or free online professionals. If the help they need can be obtained online from non-local health professionals, they may make use of their services. Thus it might be only when none of the domains above proved sufficient that they would need to consult a local clinician.

This ten level schema might provide helpful guidance for those attempting to envision our next-generation healthcare system. We might even design such a system around the idea that we should do all we can to encourage and support e-patients to manage their health concerns at the lowest possible level. This approach might help reduce healthcare costs by making some clinical visits unnecessary and by providing new resources for those without access to professional care. And since an empowered, educated, well-connected consumer is more likely to deal with an illness effectively and to obtain high quality care, it may lead to better health outcomes as well.

But while considering each level in isolation or in sequence may be helpful in orienting oneself to some of the emerging trends in online consumer health, in reality, every level has real and potential interactions with all others. When asked to comment on an earlier draft of this ten-level model, physician Don Berwick, one of the leading figures in the contemporary effort to improve the quality of medical care, pointed out the value of a more complex analysis:

I was wondering what would happen if you drew the ten "Levels" as a potential "network" of approaches, and thought about at least a few of the interactions. The full diagram would be complicated- ten boxes arrayed in a circle, with all possible dyads being drawn as connecting lines, each representing a two-directional inter-action. That's 10 x 9 x 2 = 180 possible effects, far too many to analyze, but you might pick a few to try to explore.

It is not yet possible, in other words, to understand exactly how these ten domains are affecting individual patients, or the healthcare system as a whole. To do so, we will need to study our new generation of e-patients as they use electronic media in more powerful and complex ways, inviting them to describe and explain their online activities and asking what they would like to be able to do in the future.

Approaching the emerging world of online health from the e-patient's perspective in this way may help us discover powerful strategies for upgrading healthcare. Indeed, some of the most promising new opportunities of all might elude us if we were to consider these developments exclusively from a health professional's point of view.

Published in The Ferguson Report, Number 9, September 2002


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