) - When patients sit waiting for their medical appointments, a parade of symptoms, questions and concerns may march through their minds, ripe for discussion with their clinician. But once in the exam room, they often find they don't make it through their full list, or they miss the issues most troubling them.
Dr. Clifton Bingham, who treats rheumatoid arthritis patients at The Johns Hopkins University in Baltimore, Md., hates to see those patient perspectives fail to make it out of the waiting room. "The current measures that we use in practice often do not incorporate these perspectives," he says.
Bingham and his team, with funding from the Patient-Centered Outcomes Research Institute (PCORI), are measuring the value of an increased focus on what a patient with a chronic condition is experiencing. The idea is to improve patient-clinician communication, shared decision-making and outcomes that matter most to patients.
In those with rheumatoid arthritis, these outcomes include levels of pain, fatigue, sleep quality and mood. Physicians, nurses and other clinicians, on the other hand, usually give more weight to visible symptoms and clinical measurements, such as joint swelling, lab and imaging results.
In Bingham's study, patients with rheumatoid arthritis are handed an iPad when they sit down in the waiting room. The tablet holds a questionnaire that asks about the patient's physical, mental and social health. Each patient receives different questions based on their answers to questions that came before, resulting in more personalized questions than those asked in the hard-copy versions previously given.
"For the first time in 15 years I was giving accurate, honest answers," said Julie, a patient participating in the study.
At the end of each appointment, the doctor reviews and discusses the results. "[We] may find that new things come up from the questionnaires that the patient didn't think was important to mention or that the doctor didn't ask about," Bingham says.
Initial feedback from patients is extremely positive. "I was able to have a more honest conversation with Dr. Bingham about my treatment goals, options and preferences," Julie said.
Bingham's study is one of 50 pilot projects funded by PCORI, which supports research designed to better answer questions important to patients and those who care for them. The institute requires that the work it funds be guided by patients, caregivers and other health care community stakeholders.
To participate in PCORI's work and ensure it is answering health questions
that are most important to you and your family, visit pcori.org/getinvolved.