What Is a Patient Opinion Leader?

(Originally posted on Patient Empowerment Network)

: Panelists at the City of Hope event

“Patient Opinion Leaders (POLs) are individuals who are well versed in a disease either as sufferers or care takers of individuals with chronic disorders and share their knowledge on the particular disease with others. This term is gaining widespread popularity among patients, healthcare providers and even pharmaceutical industry.“

: Patient at the City of Hope event

Opinion leadership is well-covered in Wikipedia as

“leadership by an active media user who interprets the meaning of media messages or content for lower-end media users. Typically the opinion leader is held in high esteem by those who accept his or her opinions”

A Patient Opinion Leader, first of all, is a leader: a leader in information and a leader in relaying that information to others. But a POL is more than that. These patients have the passion to learn more about their illness and the passion to spread that knowledge. They usually possess good communication skills, good basic knowledge of the treatment options and new research going on in their disease area. By no means do they claim to possess diagnostic skills or do they give medical advice. But they can guide others to clinical trials, specialist doctors and medical centers and can share information about treatment options.

And most of all, they can truly empathize, as they have walked in the patient’s shoes. They are survivors of the disease and can understand the patient’s journey as they have lived it first hand.

Patient Opinion Leaders have gained popularity recently as quite a few have been in the news. The medical industry, especially the pharmaceutical industry is sitting up and just starting to take notice. With the patient empowerment movement in full swing here in the US, e-patients and POLs are chosen to lecture or sit on discussion panels at medical conferences such as Stanford MedicineX or do media interviews with such major media players as the Wall Street Journal . And the international medical conference in Paris, Doctors 2.0 & You, has always invited patients as both speakers and panelists. Their website and all conference literature proudly displays the button “Patients Included”. They even have a sponsorship program to pay for patient entry fees and another to pay for patient travel expenses.

Most of the Patient Opinion Leaders in the news, or at medical conferences do have some sort of communication skill or media knowledge. Some have a journalism background or are currently bloggers. Some have been teachers or have a background that included public speaking of some nature. Many now use these skills to educate and empower others. Patient Opinion Leaders feel strongly about this mission, either to spread new information about the latest research and treatment options, or to motivate patients to empower themselves and take charge of their health. These individuals have a great deal of influence on the patients that follow them. They have the knowledge and the ability to empathize that only a fellow patient can have.

Andrew Schorr, Board Chair for the Patient Empowerment Network, recently wrote a post about Patient Opinion Leaders that was based on a lecture he gave to representatives from the pharmaceutical industry.

Here is what Andrew has to say,

“For many years “pharma” has spent billions on educating top physicians and researchers, people they call “key opinion leaders” or “KOLs.” These are the people other doctors listen to for guidance. Now it’s time to recognize an increasing number of patients are leaders too. As you and I seek information for our conditions weekly or even every day, many of us have become quite knowledgeable. We discuss what we learn with our doctors, we tweet, we blog, we chat on Facebook and other sites like HealthUnlocked. Some of us might be seen as “patient opinion leaders” or “POLs.” Others listen to us, including our doctors, as we pose questions and discuss new developments.”

I called on Carol Preston, CLL patient survivor, Patient Opinion Leader and communications expert for her thoughts, and she commented,

“Being a Patient Opinion Leader means more than imparting information. It also means becoming a good listener and engaging patients in a dialogue. I am a patient. I’ve had CLL for nearly eight years. I don’t want to be lectured about “what’s best” for me. As a patient, I want to be able to push back. Trust but verify, in the words of former President Reagan. A good POL will make it all about other patients. She’ll listen to their history, their fears, their treatments and then discuss possible ways forward so that patients can make the most informed choices available for their diseases.”

I also asked Patient Opinion Leader Jenny Ahlstrom of MyelomaCrowd for her thoughts. She added,

“Nothing other than having cancer will qualify you to make a contribution to disease awareness, patient education and research. On my latest mPatient Myeloma Radio interview Dr. Michael Kuehl, respected myeloma researcher at the NCI commented, ‘Patients can actually contribute to the treatment of their disease because when they ask questions they can stimulate people to think. They have a great vested interest, more so than anyone else in their disease. There are examples of patients who have come up with ideas that researcher and clinicians have used that have been beneficial.’

When I realized that no one else was truly responsible for curing me if I wasn’t willing to support their efforts, a switch turned on for me. We all have talents and abilities to contribute that can move the bar even though we may never step foot in a lab. Specialists and researchers are busy taking care of us. It’s in our best interest to accelerate their pace of discovery.”

These Patient Opinion Leaders are being sought out by medical conferences and blogsites and yes, industry. Where things get murky is when any financial exchange takes place. For years, the medical industry engaged doctors and paid them hefty fees to lecture, educate and promote their products to the medical community. In recent years, this practice has become more scrutinized and regulated. Will industry, in particular, Pharma, now pounce on POLs to do the same thing? Should POLs be specifically warned against this practice? Should POLs undergo some kind of training program to help them communicate broadly while staying well within ethics and privacy boundaries? All these are valid questions and will sooner or later be addressed.

Meanwhile, we have to rejoice in the rise of the Patient Empowerment movement and with it, the rise of the Patient Opinion Leader! These individuals work hard at what they do and are impassioned ambassadors. They are gaining followers and helping educate and support patients worldwide.

What is a Patient Opinion Leader? Do you have any thoughts on this? Please comment in the comment section below.

Thank you!