12 results for month: 04/2014


What is a Patient Opinion Leader?

Wikipedia  says, “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." 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 ...

The Age of Patient Opinion Leaders

I am writing this from a conference of pharmaceutical executives meeting in my hometown of Barcelona, Spain. I was a speaker here at the Eye for Pharma conference trying to drive home the point that the pharmaceutical industry (“pharma”) needs to support, without control, ongoing education programs for patients. I hope the message begins to sink in. 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 ...

Spotlight on City of Hope: One Patient’s Perspective

I recently attended the MPN patient conference at City of Hope, Living Well with Myeloproliferative  Neoplasms, facilitated by Andrew Schorr. As a layperson, I often find that I am lost when it comes to understanding the science behind these diseases. The information, which was presented in a question and answer type format, was easily understood thereby providing patients with much needed answers. “Knowledge is power,” and the more we know the better we are able to manage our diseases. I found the presenters, Dr. David S Snyder and Dr. Barton Scott to be very informative and easy to understand with their concise yet thorough answers to ...

Empower Yourself: Get Web Savvy!

Anyone who wants to learn more about their disease from the internet and empower themselves should take a look at  Andrew Schorr's book, The Web-Savvy Patient, NY Times health reporter Jane Brody writes in her review, Navigating the Net Wisely in a Health Crisis, "It is just such a no-nonsense guide that he and Ms. Thomas have provided. In it, they discuss the kinds of useful information that can be gleaned online, at no cost, by anyone with a serious medical condition, and they describe the hallmarks of bogus advice and commercially sponsored information that may or may not be helpful." The book is designed for those who are either ...

The Gap Between Powerful Patients and the Organizations that Should Support Them

As you know, I beat the drum for what’s becoming a “patient empowerment movement,” especially among cancer patients. And more and more of us are living longer and want to live better. You would think the medical industry would want to support our efforts to be informed and be in control and do it on a sustained basis. But, unfortunately, they haven’t caught up with our almost daily thirst for new information and expectations that our questions will be answered. It is not that the pharmaceutical industry–to take one part of the healthcare community–doesn’t want to help. I think there are many Pharma people who do. But their ...

Patient-Centered Research at the National Cancer Institute

We think of the National Cancer Institute (NCI) as more of a biomedical research-oriented institution than a patient-centered one, but there is research being done at that institution on patient satisfaction and patient-centeredness. Neeraj Arora, PhD is a Program Director for Patient-Centered Care Research and acting chief of the Outcomes Research Branch, Applied Research Program, Division of Cancer Control and Population Sciences at the NCI. For almost two decades, Arora has been conducting research focusing on patients and the patient’s perspective. He is currently building a program of research that would facilitate ongoing assess...

Spotlight on Patient Power: CLL Town Meeting in Tampa, FL

I attended an extraordinary celebration this weekend. It was held in a most unusual venue – the Moffitt Cancer Center at University of South Florida in Tampa.  Celebrants came in all shapes, sizes and ages.  This wasn’t a family event.  Participants weren’t related by blood.  Or were they? In fact, everyone in the room was connected by blood.  At least half the attendees, including me, are CLLers.  We have chronic lymphocytic leukemia.  And we came to Tampa to attend a CLL town hall meeting, organized and hosted by Patient Power as a service of the CLL Global Research Foundation and in partnership with Moffitt. For many it was ...

What is an Empowered Patient?

What is an Empowered Patient? Do you know? Watch Andrew Schorr explain:  

Clinical Trials: Good, Bad & Ugly

Clinical trials for cancer patients can be a life-saving opportunity. But most clinical trials do not even finish due to lack of patient participation. Why is this? One big issue is that many cancer patients do not hear about relevant clinical trials. Physicians often do not mention them because either they don’t know about them or because of time constraints. It takes a good deal to time to explain about a clinical trial to a patient and then to help walk them through the approval process and answer their questions. Many physicians do not have the time or the staff to do this. And often, cancer patients are too overwhelmed to inquire. I ...

How Chronic Cancer Patients Use Social Media to Stay Informed

New research and treatment has made many cancers that were previously terminal now chronic. Patients live with the condition and daily go about their lives. But often, they do have to manage their cancer and often they worry about reoccurrence, side effects from medication and progression of the disease. The chronic patient is often “forgotten”.  They are under treatment, doing (fairly) well, and doctors and the media are focusing on the more urgent issue of treating the acute or advanced cancer patient. Chronic cancer patients want to know and understand their disease.  They would like a cure and they seek out the newest and latest ...