Traditional medical care relies on face to face encounters in which patient and physician work in a collaborative fashion. However, many patients with chronic illness have limited mobility that impacts on this arrangement. We have performed preliminary studies of an extensive public bulletin board style Internet support group hosted by the Massachusetts General Hospital. These preliminary findings show that these patients want additional medical information and wish to share experiences with others in similar medical circumstances. In response to these findings, a pilot program was undertaken to offer a small number of Internet resources privately to our patients. We have found that the World Wide Web can be a valuable tool to augment the physician patient encounter. Therefore, the aim of this project is to develop a Web-based system to augment the face to face provision of medical care using inexpensive and widely available technology and to thoroughly describe that development process.
A second aim i s to engage patients who do not have Internet access at home. Lastly, the success of the system will be measured by examining its acceptance by patients and clinicians, formal usability studies, and satisfaction and quality of life of the users. An Epilepsy referral center will be used as a model system, but the applicability to other clinical settings will be demonstrated. The project will proceed through three phases. During the first phase, existing hardware and software will be upgraded to offer more resources to our users, including faster server response time, enhanced connectivity to databases such as Medline Plus, and decision-making support tools. The content of our existing site will be modified in response to feedback obtained to date. In addition, a series of focus groups will be used to further refine the present site. During this phase we will also develop relationships with non-profit, community access providers in order to provide both access and training opportunities for our users. The second phase will include identification and training of users, baseline measurement of user satisfaction and health-related quality of life, further content development and the establishment of continuing support for the completed system. Each of the steps in the process will be documented and systematically described to create a blueprint that could be applied to other patient populations, allowing an efficient replication of the successful Web-based system.
| Lester, John; Prady, Stephanie; Finegan, Yolanda et al. (2004) Learning from e-patients at Massachusetts General Hospital. BMJ 328:1188-90 |
