Pay the patient

Clinical trials revolve around patient participation.

We pay investigators,
sites,
CROs,
recruiters,
tech vendors.

Then we ask the patient to drive across town, miss work, arrange childcare, wear a device, get pricked, sit still in a MRI for 30min, answer questions, follow protocols, report stuff, and keep doing it for months.

And we worry that $200 might be too much.
The economics of clinical trials is assbackwards.

And that's if the patient gets paid.
A few years ago at a patient-focused conference, only 1 of the research teams on stage, paid patients to participate.

There is no formula for paying patients. No rate card or national benchmark.
Just an IRB sniff test: does this feel like too much? So we systematically err toward too little or nothing. Screw that.

NIH’s All of Us wrestled with paying participants for years. Smaller at-home trials decide the blood-pressure cuff and scale are compensation enough for months of cooperation.

Paying 1,000 patients $50 a month sounds expensive.
= $600,000 a year.
Or, in corporate terms: one executive.

We’ve built a multibillion-dollar clinical-trial industry around patient participation, then somehow made paying the patient the controversial line item.

We need a Common Participant Payment Enumeration (CPPE)...
a simple national language for what participant payment is actually doing:

1.000 Reimbursement:
A cost was incurred because participation was required

2.000 Compensation:
Time, effort, or burden was contributed to the study

3.000 Appreciation:
A contribution was made and recognition was provided

4.000 Incentive:
Participation was encouraged through additional payment

5.000 Undue Influence:
Payment was offered that could unduly influence participation

Then measure it.
We could unit test payment.

Cybersecurity has CVE (an enumeration of Common Vulnerabilities and Exposures, which is a free, publicly accessible catalog of known information-security vulnerabilities and software/hardware flaws). Fraud, waste, and abuse is starting to have common enumerations. Clinical research should be able to describe patient payment with the same rigor.

The goal is to know what fair payment looks like, so we can pay patients more, fairly, and without guessing.