Patients with Genetic Disorders Seek Improved Services from Managed Care Organizations

The Alliance of Genetic Support Groups (now the Genetic Alliance), a national organization representing individuals with genetic disorders and their families held a dialog meeting to develop relationships with managed care organizations with the aim of improving their genetic services delivery.

Key Results

The dialogue meeting, held July 8, 1997, in Washington, drew 20 people representing various health care organizations (including the American Medical Association), consumer groups, the National Coalition for Health Professional Education in Genetics, provider organizations, government agencies, the American Association of Health Plans, and eight managed care organizations.

Five presentations offered a springboard for exploration of:

  • The state of genetic services in a range of managed care organizations in the Mid-Atlantic region.
  • The resources of the genetics community that can complement current genetic services.
  • How genetic services can improve while meeting the specific needs of managed care.

Participants recommended a number of follow-up actions that the Alliance is pursuing.

The meeting helped lay the groundwork for developing working relationships between the genetics community and managed care administrators and providers.

The project was key in the launch of another Alliance project to develop pilot educational programs in which consumers of genetic services present their experiences to managed care organizations and medical schools around the country.