Patient experts should reflect the spectrum of patient views

Lynch and Largent discuss how the wishes and interests of current patients might not align with those of future patients.1 But current patients are not a homogeneous group with similar wishes and interests. They have a spectrum of views. Some patients with prostate cancer, for example, would trade efficacy for lower toxicity, whereas many patients with advanced cancer would choose toxic chemotherapy for minimal benefit.23Another concern is that patient experts are often drawn from a convenient sample and are not necessarily representative of the disease population demographics. Patients with advanced cancer who are receiving cytotoxic chemotherapy, for example, are likely to be under-represented as patient experts. The treatments and frequent hospital visits for scans and blood tests cause exhaustion both physically and psychologically, in addition to the financial toll.4 So these patients, particularly those from lower socioeconomic groups, do not volunteer to work as patient experts and, consequently, their lived…
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