Embracing the Emerging Role of “Expert” Patients in Cancer Care

The plethora of information and educational resources available in online cancer communities has made it easier than ever for patients to develop an in-depth understanding of their disease. Armed with this knowledge, these “expert” patients – or “e-patients” – feel empowered to navigate their care and participate in shared decision-making with their providers. This evolving modern-day dynamic is transforming the traditional patient-provider relationship.

“Because many patients have such a sophisticated understanding of their own specific disease, they stand in a much different (and better) place than those who expect physicians to be the sole experts,” says Cleveland Clinic medical oncologist Nathan Pennell, MD, PhD.

The rise of the e-patient

The term “e-patient” was first used in 1996 by researcher Tom Ferguson, MD, to describe “individuals who are equipped, enabled, empowered and engaged in their health and health care decisions.” Dr. Ferguson, who battled multiple myeloma and eventually succumbed to the disease, was the driving force behind the formation of the e-Patient Scholars Editorial Team. After his death in 2007, his colleagues published the white paper: “e-patients: how they can help us heal healthcare” to honor his longtime work.

In recent years, the role of e-patients has evolved from participation in online communities to engaging in different areas of research, advocacy and the formation of best practices.

Putting e-patients to work

In a recent article in JCO Oncology Practice, Dr. Pennell and his Taussig Cancer Institute collaborators reviewed the current literature to identify key areas where e-patients have already left their mark in cancer treatment. The article summarizes the emerging role of e-patients in three main categories – education and advocacy, research, and best practices – and describes opportunities for engaging this particularly motivated population.

The article also provides guidance for clinicians on how to best engage e-patients and tap into their expertise.

“Dealing with such a savvy, inquisitive group can be uncomfortable for physicians who are accustomed to being the sole authority. However, it’s important to remember that these experts often have a command of their disease that can strengthen the care partnership between patient and clinician,” Dr. Pennell says. “My advice to oncologists is to remain open minded, explore the patient’s expertise, offer resources, and connect newly diagnosed patients to the e-patients who may be able to help them on their journey.”

This open-minded approach also promotes shared decision-making between patients and their providers. In his own clinical practice, Dr. Pennell has treated rare forms of lung cancer in which patients’ expertise has proven especially beneficial.

“Physicians who remain receptive to the input of their most-knowledgeable patients can actually learn quite a lot,” he adds.

Recent years have also seen an increased interest in incorporating the patient voice in the drafting of national best practices guidelines and novel research directions.

“The passionate advocacy of e-patients has led to increased federal funding for a variety of cancer studies,” notes Dr. Pennell. “Their efforts have had an enormous influence on the direction and availability of national grants.”

Embracing the emerging role of e-patients

The rise of e-patients represents a unique opportunity for the cancer community to advance the field beyond improving clinical care. Dr. Pennell believes that the size and influence of the e-patient community will continue to grow as information about cancer becomes more readily available.

“E-patients are teaching the medical community how to better address the aspects of care that are most important to those battling cancer. By embracing the changing relationship we have with this burgeoning patient population, we can develop a partnership that respects and acknowledges the patient’s voice,” he concludes.