Giving Compass' Take:

• Doug Irving argues the importance of patients having a say in medical guidelines since they are the ones directly affected. 

• How are patients becoming included in the care process? How would this create an effective and impactful health system? Why is it important to prioritize the patient and their comfort in healthcare?

• Here’s how a lack of trust has created a barrier to patient-centered care.

Brian Denger knows as much as anyone about caring for a child with Duchenne muscular dystrophy, a rare and fatal genetic disease. But you won't find him listed as a contributor to the clinical guidelines that doctors use to treat the disease. That's because he's not a medical expert, not a doctor; he's a father.

Clinical guidelines have become as much a part of medicine as lab coats and stethoscopes. They can dictate insurance coverage and help hospitals set quality standards. Yet they often lack the perspective of people like Denger who care the most about good treatment: patients and their caregivers.

“Clinicians are experts, but the patients with the disease are also experts. They're the ones living with it on a daily basis.”

Researchers at RAND have been working with Denger and other families living with Duchenne to better center clinical guidelines on the realities of real patients and caregivers. Their solution borrows from a method developed at RAND nearly 70 years ago to help military planners think through the challenges of the emerging Cold War, the Delphi method.

Read the full article about giving patients a voice in medical guidelines by Doug Irving at RAND Corporation.