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Informed patients make best advocates for PCOS research
Clinicians know that communicating often-complex medical concepts to patients is the cornerstone of effective care. Most biomedical investigators have failed to establish similarly effective communications with patients, who are our most important constituency because it is they who stand to benefit from our efforts. Further, informed and energized patients are clearly the best advocates for biomedical research, particularly now when funding is in tremendous jeopardy.
Physician-scientists are uniquely positioned to engage patients in the importance of scientific discovery. As a clinical investigator whose entire career has focused on elucidating the etiology of polycystic ovary syndrome, I have found that partnering with affected women has been essential for the success of my research efforts. Moreover, it is truly gratifying to experience the altruism that motivates patients to volunteer for studies. They recognize that, although they likely will not directly benefit from our investigations, participating in studies is the only way to improve the care of others.
Patients understand science, treatment
Most patients are completely capable of comprehending sophisticated scientific topics when explained in lay terms. With the widespread availability of medical information on the Internet, many women with PCOS accurately self-diagnose the condition when it has been missed by multiple physicians. They often have a good grasp of available treatment options. It is usually easier to discuss diagnostic and therapeutic options with the informed patient than with colleagues in primary care.
Andrea Dunaif
I provide an overview of current understanding of the pathophysiology and the unanswered questions in the field when I discuss my work with potential volunteers or with patient groups. This discussion frames the planned studies. For example, a major focus of my work for the past 20 years has been mapping genes. Patients understand that many conditions are inherited and recognize the importance of finding the responsible genes. They also find it logical to study their relatives to look for signs of PCOS. Indeed, affected women are exceptionally concerned about their daughters developing the condition.
Research transforms care
The greatest satisfaction of my career is the fact that my work has transformed the care of patients. PCOS is now recognized as a major metabolic condition affecting women and their families across the lifespan. Affected women are routinely screened for diabetes. Treatments that target insulin resistance, a key abnormality in the condition, have become an important therapeutic modality. Going forward, partnerships with patient groups, such as PCOS Challenge, will be essential for efforts to find a more appropriate name for the disorder to ensure that it receives the recognition it merits from the broader medical community.
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- Andrea Dunaif, MD, is Vice Chair for Research, Department of Medicine, Northwestern University, Feinberg School of Medicine. She reports no relevant financial disclosures.