We spoke to Matthew Zachary, the outspoken Chief Angry Officer of Stupid Cancer, about how patients are treated in clinical trials
After surviving brain cancer as a 21-year-old, Matthew Zachary founded Stupid Cancer in 2007 to address the 72,000 new diagnoses of young adult cancer each year. It has since grown in to the largest US charity providing advocacy, research and support for the often neglected group of 15 - 39-year-olds.
We spoke to the self-described ‘global healthcare disruptor and Chief Angry Officer’ about how patients are currently treated in clinical trials and how that could be improved.
How well do you think the industry currently works with patients in clinical trials?
Miserably. “90%of all clinical trials worldwide fail to enroll patients within the target amount of time and must extend their enrollment period.” Source: Transforming Clinical Research in the United States: Challenges and Opportunities
As an industry, the answer is a system-wide failure of goals vs. working with patients to achieve them. Either the goals are wrong, the way industry works with patients is wrong, or both.
Why is it important that the industry focuses more on patients in clinical trials?
Because patients have more access to information and choice about their treatment than ever before. Plus, industry should be thinking about patients as ‘healthcare consumers’ instead of patients.
How would you convince a Pharma executive that they should be taking a more patient-centric approach?
I wouldn’t even try. That’s like asking, ‘How would you convince the executives at Hilton Hotels to suddenly care more about their guests?’ You can’t. Why? Because hotel guests have more choices than ever about which hotel they book at — and the entire hospitality industry is getting disrupted by shared economy platforms like AirBnB. If hotel executives don’t take clear steps to make their guests feel important, guests simply won’t choose that hotel.
Clinical Trials are no different. If a patient feels unimportant or mistreated, they simply stop coming, even if it may be against their own self-interest. Trial sites can take a week to follow up with a patient who inquires about a trial. If you’re a trial site, you may feel completely fine about that. If you’re a patient with a serious illness, you likely can’t wait and have moved on.
How important are patient advocate organizations like Stupid Cancer? What changes have you seen thanks to efforts from similar groups?
Patient advocate organizations—by definition—focus on giving patients the best available information to help the patient achieve their goals. This is the opposite of industry-organizations whose focus is finding the best patients to enroll in their trials. Neither approach is inherently right or wrong, BUT we have to be honest about that reality and work together if we’re ever going to make change.
How is Patient-Driven Technology and social media etc. disrupting how clinical trials function and the role of the patient within them?
Patient-Driven Technology is empowering patients to make more informed and objective decisions that fit their personal goals on their terms. Even though patients still rely heavily on their doctor's advice, they are doing more searching for targeted information and support than ever. Some view this as the doctor (and industry by and large) losing power while others view it as patients taking a larger role in their healthcare decision.
A doctor can’t possibly research all of the clinical trial options for each patient. The doctor typically refers patients to:
1. trials that he/she is involved in
2. trials happening at his/her hospital
2. trials happening at his/her hospital
Those two things are relatively unimportant to patients and their caregivers. Most patients tell us they want to know (1) what are you going to do to me (2) what might happen as a result—good or bad.
Patient-Driven Technology is an approach that prioritizes providing answers to the questions that matter the most to the individual. This peer-driven community wisdom empowers and comforts patients make decisions they can take ownership of.
When you support patients at all stages of the clinical trial evaluation/enrollment process better outcomes are achieved then when you try to steer them into trials that fit the needs of the PI or hospital's goals.