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Patients are the KEY Stakeholders in Clinical Trials

Last week I had the pleasure of sitting down for lunch with Sandra Gazel (@sgazel). Sandra is one the most of knowledgeable managers I know. I had the pleasure of working with her on several oncology trials early in my career, when I was a Lead CRA . She has always had a great sense of responsibility and an equally impressive ability to challenge and motivate her staff to strive for more.

She is currently the Associate Director, Clinical Operations for a global pharmaceutical company, and as such, she provides strategic direction and oversees all operational aspects for the conduct of clinical trials in Canada and around the world. A self-described “Pharma Researcher who believes in the power of patients to inspire health innovation ideas” her true passion lies in “reinventing the way clinical research is conducted by openly engaging patients throughout the clinical research process”. During our conversation Sandra told me that drug developers can no longer afford, either ethically or financially, to disregard the voices of clinical research participants. She said the conversations are taking place and pharma needs to be a part of it.

That last bit really resonated with me and I left our lunch meeting asking myself; Where are these conversations taking place? Who are the major headliners in patient activism? And what is industry doing?

Who is informing & educating cancer patients?

The 1st thing I did when preparing for this blog was to use my favorite search engine ( to seek out ‘tangible’ clinical trial patient information. Now like you, I’ve read the many misconceptions the public has about clinical trials. I’ve also read and heard about the lack of information available for patients.

But come on, how difficult could it really be to find relevant information in this day and age? I mean, I’m tech savvy, I know about Search Engine Optimization (SEO), I know about Social Media, I know about keywords. Plus, I’m an industry guy, I’ve spent the last 12 years working in Oncology Clinical Operations, so I should have no problem finding this stuff right?

Well, I was wrong, and was dumbstruck by how difficult it really was to find tangible information for patients, especially those with a life threatening diseases like cancer. - ASCO's Patient Information WebsiteNow I must be fair, there are several well funded organizations out there who do offer excellent information, such as ASCO’s Cancer.Net, The American Cancer; The National Cancer Institute (; The Canadian Cancer Society (; The Ontario Institute for Cancer Research (; as well as several excellent patient advocacy groups such as The Leukemia & Lymphoma Society (; the International Myeloma Foundation (; and The Colorectal Cancer Association of Canada ( There are also ones for Lung, Breast, Head and Neck, Ovarian and almost every specific cancer indication you can think of. But rarely did these sites, contain data on clinical trial participation. Many do explain what a clinical trial IS, but as for actual ‘for the patient by the patient’ information…. Not really.

So then, Who Are The Major Headliners In Patient Activism?

Three great examples immediately came to mind that were relatively easy to find:


Know CancerDedicated to connecting, educating and empowering all people affected by the many forms of cancer. Through the power of knowledge and collective wisdom they help people to prevent, endure and survive cancer. Their current focus is an online community that provides social and professional support to patients and their loved ones. The website contains three main sections:

Cancer Education: an ever-growing comprehensive library of cancer related content;
Cancer Community: a feature rich social network with a personal journal and media gallery, the Know Cancer blog, and an “Ask the Expert” section;
Cancer Resources: a nationwide resource directory of cancer related businesses and organizations .

The overall purpose of is to create an environment where the members of the global cancer community—including cancer patients, survivors, their loved ones and everyone else fighting for a world without cancer—can learn together, interact and ultimately find the information, support and resources they need.

PatientsLikeMe:  Co-founded in 2004 by three MIT engineers: brothers Benjamin and James Heywood and longtime friend Jeff Cole. Five years earlier, their brother and friend Stephen Heywood was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29.

The Heywood family soon began searching the world over for ideas that would extend and improve Stephen’s life. Inspired by Stephen’s experiences, the co-founders and team conceptualized and built a health data-sharing platform that we believe can transform the way patients manage their own conditions, change the way industry conducts research and improve patient care. They follow four core values: putting patients first, promoting transparency (“no surprises”), fostering openness and creating “wow.” They work with trusted nonprofit, research and industry Partners who use this health data to improve products, services and care for patients.

Jeri Burtchell – A mother of two (ages 30 and 14), Jerry was diagnosed with MS in 1999. She entered the TRANSFORMS clinical trial for Fingolimod (Gilenya) in 2007 and blogged about her experiences at She is now a patient activist and Gilenya Guide and travels around the country bringing the word of Gilenya to as many “MSers” as possible.

What is the Pharmaceutical Industry Doing?

Pharmaceutical companies are in a difficult position. A survey conducted by Boston-based WEGO Health, reported by Medical Marketing & Media revealed that a lack of best practices or rules of engagement on sponsoring social networking sites for a particular disease, paying bloggers to create content, and paying for health and medical content to be placed in social media is slowing down the process. And while many companies worry that missteps could result in bad publicity among consumers or worse, incur warning letters from the U.S. Food and Drug Administration1, some are decidedly willing to take the risk and help write the rules.

CROs are also taking the plunge, though in a more direct way, and have begun offering services that improve patient participation in clinical trials. One such company is Symphony Clinical Research℠, a global service leader providing in-home and alternate-site clinical services to patients in all phases of clinical trials. Symphony has perfected the process of making study participation easy and convenient for patients, by taking some of the trial visits to patients in their homes, workplaces or other convenient locations.  By making participation convenient, they’ve been able to demonstrate that patients will participate in trials and stay in trials. This provides many positive benefits and cost savings to study sponsors.

Nicki Norris is the Symphony’s CEO. She joined Symphony in 2009 and is responsible for the leadership and strategic direction of the company. At this year’s Disruptive Innovations in Clinical Trials Conference in Boston, she delivered a presentation on “Re-Thinking the Patient in Clinical Trials” that sparked significant interest.

“…pharma can no longer depend, nor expect, the patient to always come to us – especially given the complexity and length of our trials. Pharma needs to accommodate and respect the patient’s time, medical condition and quality of life if we want to meet our enrollments, retain good patients and obtain quality data”. – Nicki Norris

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