Members of patient registry Arthritis Power, organized by patient-centered research organization Creaky Joints, demonstrated the value of using patient voting panels to shape clinical practice guidelines in a pilot study published in Arthritis Care & Research.
Clinical practice guidelines published by American College of Rheumatology define the standards of rheumatology practice for at least three years, according to a press statement. Patients are included in guideline development work but they tend to only make up a couple of token members in voting panels led by clinicians.
The pilot study sourced 10 rheumatoid arthritis patients from an app-enabled patient registry Arthritis Power, developed by Creaky Joints. These patients, aged 29-56, had lived with the condition for an average of 10 years. The pilot involved immersing them in eight-hours of training prep to understand the ACR guideline voting process. Arthritis Power uses apps to gather feedback from the diverse arthritis patient population, using weekly questionnaires to gauge how they feel in connection with their meds.
Although patients only voted on a portion of the questions, the study found that patients developed nearly the same recommendations as physician-dominated panels for those questions.
So where did patients differ from physicians? Perhaps not surprisingly, it was the importance they gave to side effects when they evaluated treatment scenarios. Patients put more emphasis on quality of life, such as reducing gastrointestinal side effects and the potential benefits of a treatment. The physician panel opposed a combination of three medications but the patient panel believed that the increased chance of remission justified the use of three medications.
Kelly Clayton, a patient participant, said in the statement that the patient perspective is vital.
“Our patient panel demonstrates that—with proper preparation—people living with RA are well equipped to meaningfully contribute to the recommendations that will influence our future treatment.”
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
The pilot demonstrates the potential for patient communities to have a more vital influence on clinical guidelines. It also suggests that the difference between patient and clinician perspectives isn’t as great as imagined.
Photo: Flickr user Peter Prehn
