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  The Robert Wood Johnson Online Health Project:
What Kinds of Online Health Research are Really Needed?

The Age of Information Age Healthcare has already begun: When faced with a health problem or concern, the typical wired US adult is now more likely to turn to the Internet than to consult a physician.

A new generation of e-patients is emerging. As these online health pioneers travel through the self-help neighborhoods of cyberspace, they are finding-and are creating-unexpectedly rich networks of health-related resources: information, people, professionals, groups, and software applications. With the help of these new online resources, e-patients are taking over the management of more and more of their own medical care. They are, in essence, creating a new, patient-centered healthcare system that is now operating side-by-side with our traditional provider-centered system.

Yet so far, this revolution has gone largely unnoticed. Few studies have been done. Few health professionals understand what their patients do on the Net, what it means to them, and the significance of these new patterns for traditional providers. Few of the other key stakeholders-healthcare executives, business leaders, policymakers-understand the significance of these developments.

The online health revolution has come in under the radar of most professionals because it has been led not by physicians, not by dot-com entrepreneurs, and not by researchers at some secret NIH laboratory, but by millions of activist e-patients. In much the same way as e-investors transformed the brokerage industry, this first generation of e-patients is leading us into the emerging world of Information Age Healthcare.

To help healthcare professionals and policymakers understand and come to terms with these changes, the Robert Wood Johnson Foundation (RWJF) has asked me to help them develop a listing of top research priorities in the realm of online consumer health. I am currently working on two white papers which will suggest fertile areas for research in each of the following areas:

    1. Net-Savvy Patients, Online Patient-Helpers, and Online Support Communities: Essential New Members of the Healthcare Team The first white paper will focus on online health research having to do with the experiences of online health seekers "out on the open Internet"-with special attention to such formal and informal community-based online resources as online support communities, online patient helpers, virtual health professionals, and private patient-centered networks.

    2. From "Doctor's Orders" to Clinical Conversations: Using the Net to Connect Doctors and Patients in two-way Conversations and to Increase the Patient Voice in Clinical Care. The second white paper will focus on ways that IT resources can be used to upgrade and transform the interactions and relationships between patients and the healthcare providers with whom they have a conventional provider-patient relationship.

I would welcome your suggestions for each of these two white papers. Several examples of the types of suggestions we are looking for appear below.

Since we know so little about the emerging world of online health, and since it is often possible to do online health research very inexpensively, it seems to me that it would make the most sense to start small. Thus I would be inclined to recommend that the RWJF should begin with a number of small-scale quick-and-dirty probes into the terra incognita of online consumer health. While the following list is by no means exhaustive (please tell us what you think we're leaving out), here are a few of the emerging themes or trends which are currently on our hot list of potentially interesting territories to explore:

    1. Let's follow a group of patients newly-diagnosed with a major disease like breast cancer, to observe how they use online health resources for the first six months following their diagnosis.

    2. Our surveys show that 50-plus percent of those looking for health information are family members and friends and caretakers who serve as online health agents for the designated patient. Let's develop a project that would help us understand more about these online health surrogates and the roles they play in providing, supporting, and collaborating in a loved one's care.

    3. We're now seeing the spontaneous emergence of patient-centered online networks of family and friends which keep everyone linked in with the latest events regarding a friend or family member's illness. How do such networks contribute to the designated patient's care? How do they affect the friends and family members involved? How do they change the dynamics of the doctor-patient relationship?

    4. Thousands of experienced online self-helpers have set up Web pages to help others with the same disease. What exactly is it that they do and why do they do it? What resources and services do they offer? And how valuable are these offerings to other patients with the same conditions?

    5. There are now disease-specific online support communities for nearly every conceivable health concern. How do these groups operate? What benefits do they provide for their members? What special roles do specific members play, e.g., founders, hosts, providers of emotional support, reviewers of the medical literature, etc?

    6. Hundreds of online cyberdocs now answer questions and/or offer information and advice-most for free, but some for pay-on the Internet. How many e-patients make use of these services? What happens when they do? In what ways do they find them helpful? How do these services compare to, complement, or compete with the services a patient might receive from local doctors?

    7. Millions of patients are now bringing printouts from the Internet to their doctors' offices. What materials do they bring? What happens when they do so? What types of provider-patient interactions result? And how does this effect other aspects of the doctor-patient relationship?

    8. Surveys suggest that a growing number of e-patients are now routinely corresponding with their doctors via e-mail. Do the patients initiate these electronic exchanges, or do their doctors suggest it? We'd like to do ethnographic interviews following a number of doctor-patient dyads from the very beginning of their electronic communication through the first year of their e-mail relationship.

    9. A few clinical facilities are in the process of developing innovative programs of online patient services. What is the typical "natural history" of such innovations? How do they get started? What kinds of barriers and resistance do they encounter? We'd like to do ethnographic interviews and to develop narrative histories of the experiences of several of these early adopters.

    10. We've heard intriguing stories of disease-specific online support communities working cooperatively with medical researchers, passing on observations they've made in their own discussion groups and suggesting promising areas for new studies. We'd like to know how frequently this happens and to explore the potential value of disease-specific online communities in initiating, guiding and supporting medical research.

These are just a few examples of the kind of research ideas we are currently collecting. Please send us your own ideas for online health research. Those who submit the most useful suggestions will be acknowledged in the White Paper. Please send me your ideas via e-mail at doctom@doctom.com. Many thanks!

Published in The Ferguson Report, Number 8, January 2002


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