“One of my reasons for being in this field,” says Dr. Michaud, “is my frustration with what little progress in the field I perceived in the 80s and 90s.” One potential way forward revealed itself after working with the NDB. “We found that the most powerful predictors of future disease severity had less to do with what we observed of the patient in the clinic and more from how the patient reported how they’re doing over a questionnaire,” he says. A patient’s perception of his or her own limitations or improvements over time proved highly informative. The next step for Dr. Michaud was to then link such observations with clinical evidence.
Enter Quest Diagnostics. “It’s one thing to fill out something online, but quite another to get someone to donate blood,” Dr. Michaud notes. After becoming aware of the initiative, Quest volunteered their nationwide network of associations to do blood draws free of charge at the location of greatest convenience to the patient. In exchange, Quest will have access to de-identified information about the patients.
In the first year since launch, AIR has enrolled 1,000 patients, and the immediate task at hand is to verify diagnosis with the patient’s physician. Second, Dr. Michaud must determine if results for the cohort are generalizable—as with clinical trials, research participants tend to be highly motivated and responses may be skewed.
Initial queries have been encouraging. “We’re finding that, for the RA patients at least (fibromyalgia and lupus patients are also enrolled), we’re getting over half that are seropositive,” Dr. Michaud says. This rate correlates with historical clinical cohorts. “We were afraid that we weren’t going to be getting true RA, and so far that is unfounded,” he notes.
Participation in the program is moderate for the moment, because AIR lacks both funding and patient awareness. However, Dr. Michaud is confident that once word gets out he will be able to hit his target of 20,000 participants out of an estimated 5 million-plus patients in the United States with rheumatic disease.
As a rheumatologist, I need to be focused on the complex problems, defining a treatment plan, and dealing with complex complications. If I’m in the room telling somebody that their blood count is normal, that’s a waste of everyone’s time
—William McClatchey, MD
Patient’s Care, Patients Caring
To facilitate patient care, Quest Diagnostics has also designed and offered up, free of charge, several smart-phone apps. A big fan of this technology is rheumatology patient Ashley Boynes-Shuck, of Pittsburgh, Pa. “I can get my test results, and it has options to email or fax the results to myself or to any of my doctors. That’s really nice because, on occasion, I’ll see someone who is not in the University of Pittsburgh Medical Center [UPMC; an organization with e-records and patient portals].” Within UPMC, Boynes-Shuck can view test results, get appointment reminders, and see prescription information online.
