Patient groups have become an essential part of the healthcare system for many diseases, promoting research, prevention and timely treatment. These groups have proved critical in raising the profile of these diseases among politicians, funders, health care providers and the general public.
Such groups are particularly important for viral hepatitis. Despite the fact that it is responsible for 2.7% of all deaths worldwide and infects more than 2 billion people, viral hepatitis remains largely ignored.
To help address this need, the World Hepatitis Alliance has launched the Patient Advocacy Creation Tool (PACT), a free online resource.
PACT is primarily aimed at doctors and other healthcare workers, as they are the people most likely to be in contact with large populations of hepatitis patients, but it can be used by anyone to start a patient group.
The interactive resource is divided into two sections of three parts each, with short videos, graphics and step-by-step guidelines.
The first section provides helpful background on the importance of advocacy for viral hepatitis and the key role that patient groups can play, as well as the benefits of patient support groups.
The focus of the second section is practical: how to start a patient group, how to help a group grow and become more effective, and how the World Hepatitis Alliance can assist.
PACT describes why it is especially important for physicians to be involved in the development of patient groups, and how they benefit providers as well as patients. The tool is designed both for groups that are primarily concerned with patient support and for those that are more oriented toward advocacy.
You can access PACT here.
This short video from Charles Gore talks about the need for patient advocacy groups.