A Journey Begins with the First Step

Dr. Daikh

As clinicians, researchers, and healthcare providers, we know the importance of communicating with our patients. Communication plays a vital role in our ability to provide better care and develop new treatments, but it also helps us understand the impact of rheumatic disease on those individuals and families affected by it.

The ACR Research and Education Foundation (REF) launched the new Journey to Cure campaign last year with the twin goals of advancing patient care and accelerating discoveries. We did so with the understanding that these ambitious goals cannot be accomplished without the input and support of patients and families affected by rheumatic disease.

To that end, at the same time Journey to Cure was getting underway, we also launched the Action Alliance network. This program calls on rheumatologists, investigators, and health professionals to join us in asking patients and families to be a part of the conversation.

The Action Alliance consists of two programs working together: our From the Field Speakers Bureau and Patients and Families for Progress. Members of From the Field present a series of nationwide informational sessions called “Coffee & Conversations.” These are events intended to garner focused conversations around the critical need to continue investigator-driven research and to mobilize interested individuals to support our mission in the future.

A rheumatologist, an investigator, and a health professional will speak at the “Coffee & Conversations” events. These From the Field speakers will share with patients and families their perspectives regarding the latest developments in research, treatment, and care.

At the same time, members of Patients and Families for Progress will provide important feedback and continued support of our efforts.

A perfect example of this kind of collaboration can be found in the story of Louise Pinter, a member of the REF Patients and Families for Progress program. Pinter had eight joint-replacement surgeries due to complications from rheumatoid arthritis (RA). Her family doctor referred her to a rheumatologist, John Goldman, MD, and he was able to find a treatment that worked for her. Since 2006, Pinter has had relief from her symptoms. “I will knock on wood and say I haven’t had to have anything since,” she says.

During an appointment in early 2007, Dr. Goldman invited Pinter to get involved with the REF. “He said, ‘You appear to be doing better and want things to do, and so I think it would be a good idea for you to get involved,’ ” Pinter says.