In the world of science, customer service does not exist. But what if it did?
Instead of treating patients like a number assigned to the control or intervention
group, what if we treated patients and their families as if they were the most
valuable customers on the planet?
According to the National Institutes of Health (NIH), more than 80% of clinical
trials in the U.S. do not meet their patient recruitment timelines. Moreover, up to
50% of research sites enroll one or no patients. The longer it takes to get a drug
to market, the more costs are increasing, and resources are depleting.
Healthcare providers seem to think that if patients only knew clinical trials were
available and only knew how to use clinicaltrials.gov then their problems would
be solved. Not true. Approaching the accrual problem in this manner—the
patients lack knowledge and tools—puts all the blame on them and none of it on
the people who design the trials. If you want to see a radical change in clinical
trial recruitment and accrual, you must flip the script.
For several years, I’ve been talking about these issues. I propose three pillars
that would revolutionize clinical trial design.
1. Be transparent
Be 100% transparent before, during, and after the trial.
I worked on a five-year clinical trial at UCLA that ended in 2007. The results of the trial were not released for ten years! I’m sure the participants in the intervention group would love to know the outcome of the trial. Given the time lapse, I doubt anyone notified them. Ten years is a long time between completion and publication but it’s still worth notifying the participants.
When a patient commits to a trial, they’re not only doing it for themselves, they
are also doing it for science. Keep them updated even after they complete the
trial. If they die, keep their families updated if they wish. Let them know how their loved one contributed to the science that improved the lives of future patients.
2. Pay for everything
Pay for everything. YES—everything. Not just medicine. EVERYTHING.
Food. Transportation. Lodging. Childcare.
Most clinical trials are not designed with the patient’s costs in mind. Insurance will most likely not cover an experimental treatment. Even if the drug is covered by the trial sponsor, patients have many other costs that are usually not
incorporated into the clinical trial design.
- Food (pay for all meals)
- Transportation (pay for gas, Uber, airfare, etc.)
- Lodging (pay for any overnight stays)
- Childcare (provide on-site childcare OR provide a childcare stipend)
I’ve seen many trials shut down because they didn’t meet their accrual goals.
Often, it’s because the design of the trial was too onerous on the patient.
Usually, the only “cost” covered is the drug. That’s ridiculous. In 2019, the average household income for Americans was $63,688. That’s household income, not individual income. In certain parts of the country, that figure would put a family of four below the poverty line. It’s hard enough battling a serious disease like cancer; don’t make it more difficult by expecting patients to pay for hotel rooms and plane tickets they cannot afford.
3. Treat patients like they are guests at a five-star resort
Treat patients like they are guests at a five-star resort. Seriously.
Here’s how to design a five-star resort experience:
In theory, a patient will experience quality care in a clinical trial because of the
high provider-low patient ratio. However, a clinical trial site can exceed
expectations with customer (i.e., patient) service.
- Have multilingual staff, especially nurses.
- Assign one person—the concierge of the clinical trial—to be available for
patients to answer any questions they or their family may have.
- Provide food, transportation, lodging, and childcare. Paying for everything
is one pillar. Providing it as a service is on another level.
- BONUS: housekeeping, laundry, and/or dry-cleaning services.
Whether the trial protocol includes overnight hospital stays or weekly visits to a
clinic, make the experience feel better than home.
- Install cozy beds with linen choices that include sheets, blankets, and
- Include a room service menu (many treatment centers already do) with real food that is both nutritious and tasty.
- Provide entertainment options like Smart TVs with streaming services.
- Have additional outlets, especially USB plugs, so patients can charge their own devices.
- Make it possible for patients to sleep by giving them masks and ear plugs. Blackout shades are another option.
- BONUS: Dedicate rooms specifically for trial participants to provide a sense of community.
Amenities? In a clinical trial? Yes! If you want to create a true five-star resort
experience, you need to give patients and their families amenities that make their lives easier. Remember when you couldn’t use your cell phone in hospitals?
Well those days are gone, but the cell service in treatment centers is still lacking
among many other things. So, consider adding:
- Free Wi-Fi
- Stocked mini bar with free beverages like bottled water and juice
- Selection of local and national daily newspapers*
- Full-length mirror*
- Spa-like treatments** that include physical therapy (if appropriate) and
If these three pillars were incorporated into every clinical trial design, do you
know what would happen? Patients and caregivers would tell everyone. They
would post on social media. They would tag their doctors on Facebook. When
they couldn’t find their doctors on Facebook, they would find them on Twitter and
tweet how wonderful they are. Hashtags like #bestdocever would be trending.
They would create Instagram stories from their hospital room talking about the
amazing mattress on the bed courtesy of Casper. They would rave about binging
on a Netflix series on the Smart TV sponsored by Netflix.
They would make you—the trial sponsor, research site, principal investigator,
the research team—look like rock stars.
Why? Because despite dealing with a terrible disease, you made them feel valued. Special. Worthy.
How? You were transparent, you paid for everything, and most importantly, you
treated them like guests at a five-star resort. They’re not on vacation but it’s as
close to a vacation that they may get for a long time.
Finally, you stopped being the superhero doctor who discovers an incredible drug
that will save their lives. You realized the most important thing of all: without
patients, you don’t have anyone for your research. It doesn’t matter how good it
is, it won’t go anywhere. You’re not the hero in their story, they are.
Remember: You need them MORE than they need you!
* Ask patients if they want this option. Some people don’t read newspapers and some patients may not want a mirror in their room.
** With doctor approval