President's New Freedom Commission on Mental Health Excerpt

Personal Health Information Systems Can Help Consumers Manage Their Own Care

The Commission found that the general public can now access a great deal of valuable health information through the Internet. Most consumers and families want up-to-date information about the symptoms and mental disorders with which they are dealing, as well as information on effective treatments and supportive services. But today, reliable information is not always available when and how people need it most, and it is not readily or universally accessible to all Americans. Consumers should have the choice and capability to obtain, store, and share their personal health information.

Systems are already available to support access to Internet assessment services and health information sources in order to build a personalized health information library. Consumers can use these systems as research tools to:

  • Evaluate the quality of care provided,
  • Participate in on-line support groups,
  • Evaluate best practices,
  • Learn about the most recent treatment breakthroughs, and
  • Determine how to best use resources they manage.

Consumers should have the choice and capability to obtain, store, and share their personal health information.

The Network of Care for Mental Health, an individualized mental health resource Web site, provides a model for how consumers can use Internet technology to find pertinent mental health information; identify available services, supports, and community resources; and keep personal records on secure computer servers. (See Figure 6-2.)

Figure 6-2. Model Program: Individualized Mental Health Resource Web Site

Program Network of Care for Mental Health
Goal To help ensure "No Wrong Door" exists for those who need mental health services.
Features The user-friendly Web site enables consumers and families to find pertinent mental health information; identify available services, supports, and community resources; and keep personal records on secure servers. Consumers and families can search the site's comprehensive Service Directory - by age group, diagnosis, program or agency name, key word, or by using the 20-category menu-for mental health treatment and supportive services provided by the county and other organizations. The site also offers up-to-date information about diagnoses, insurance, and advocacy, as well as daily news from around the world concerning mental health.
Biggest challenge Gathering and organizing an enormous amount of information while making it easily accessible to Network of Care for Mental Health Web site users represents the major challenge.
How other organizations can adopt The Network of Care Web site can be easily and cost-effectively replicated in any location because the entire infrastructure - and many of the data components; e.g., the library and national links - are identical from one region to another. Only certain county-specific data (e.g., available mental health treatment and support services) must be developed for each new site.
Sites The San Diego Network of Care for Mental Health Web site was launched April 30, 2003; another is now being developed for Los Angeles County, California.
Web site http://www.networkofcare.org

Consumers and families must be assured that their privacy and the confidentiality of their health information are well protected. If health care systems do not make substantial, front-end, ongoing investments to protect privacy, electronic health information systems are doomed to fail. Existing Federal regulations that balance privacy protections and the need for shared information within the health system, such as the Health Insurance Portability and Accountability Act (HIPAA), must be constantly re-examined to ensure that they adequately address both provider and consumer needs.

If health care systems do not make substantial, front-end, ongoing investments to protect privacy, electronic health information systems are doomed to fail.

The Commission recommends that HHS and VA lead a public-private effort to create and promote use of software for Internet access to privacy-protected, personal health information that consumers maintain and control. Consumers and families must be involved in designing, evaluating, and implementing the system that would enable them to personalize their records. The software and training should enable consumers to personalize their health information record through links to key portions of their health records, local consumer support groups, self-care trackers, advance directives, and directories of local service providers located in or near their own ZIP Codes. This personal health information system should include the following elements:

  • Electronic copies of key portions of individual health information, including records from health care providers, laboratories, and pharmacies; personal health trackers; and advance directives, care reminders, and self-entered health information;
  • Access to Internet assessment services and health information sources so that they can build a personalized health information library;
  • Interface with a wide range of services and programs, including prescription, appointment scheduling and reminders, medication refills, participation in consumer and support groups, and alerts to new research findings and projects;
  • Availability to the general public, consumers, and families; and
  • Universal design to ensure access for people with sensory perceptual and physical disabilities and availability in a broad range of multilingual formats.