Incentives

Grand Rounds January 16, 2026: Financial Incentives to Promote Diverse Participation in Alzheimer’s Disease Research (Mireille Jacobson, PhD)

Posted on by Sophia Ramirez

Speaker

Mireille Jacobson, PhD
Professor, University of Southern California Davis
School of Gerontology and Schaeffer Institute

Keywords

Incentives; Financial incentives; Alzheimer’s Disease; Participation; Dementia

Key Points

  • There are nearly 6 million people living with Alzheimer’s Disease and related dementias (AD/ADRD) in the United States, a number projected to double by 2060. Despite the feact that the highest rates of AD/ADRD are found in Black and Hispanic populations, diversity in Alzheimer’s Trials is limited; between 2000 and 2019, 90% of completed trials had 75% – 100% non-Hispanic White participants.
  • The Alzehimer’s Prevention Webstudy (APT Webstudy) is a remote registry in which participants, aged 50 and older, take quarterly memory assessments. The research team sought to assess whether financial incentives could increase diversity in the APT webstudy. 45,000 patients were invited to enroll; the first ~15,000 (Arm 1) were invited via message only, Arm 2 was offered a $25 incentive, and Arm 3 was offered the chance to win $2,500.
  • The study team found that the $25 guaranteed incentives increased enrollment the most, but messages alone were the most cost-effective. 29% of new enrollees were Black or Hispanic patients, an improvement over the APT Webstudy baseline of 5.4%. However, the study team concluded, more needs to be done to enroll people of diverse backgrounds specifically.

Discussion Themes

Attendees considered the ethical implications of the $25 and whether it qualified as coercive when offered to low-income communities. Dr. Jacobson believed that $25 was not enough to be coercive in the context of a low-risk registry study, but that the ethics might differ in a clinical trial involving medication risks.

While higher amounts might increase participation, Dr. Jacobson suggested that messaging frequency may be a more critical factor than increasing the dollar amount.

November 29, 2021: New Article From the NIH Collaboratory Examines Use of Incentives and Payments in Pragmatic Clinical Trials

Posted on by Damon Seils
Head shot of Dr. Andrew Garland
Dr. Andrew Garland

Members of the NIH Collaboratory’s Ethics and Regulatory Core examined the use of incentives and payments to patients included in pragmatic clinical trials. Their findings and preliminary recommendations are published in the December issue of Clinical Trials.

Incentives and payments to patients are used in both pragmatic trials and conventional explanatory trials. However, because pragmatic trials typically evaluate interventions in the context of “real-world” clinical settings, the use of incentives and payments can raise logistical, ethical, and regulatory challenges.

Dr. Andrew Garland, a postdoctoral fellow at the Johns Hopkins Berman Institute of Bioethics who works in the Ethics and Regulatory Core, and who is the lead author of the article, reviewed 9 NIH Collaboratory Trials that used incentives and other payments to patients. Garland and coauthors Dr. Kevin Weinfurt and Dr. Jeremy Sugarman used these examples to describe how the standard conceptual framework for ethical payments and incentives may not always be appropriate for pragmatic trials.

Read the full report.

This work was supported within the NIH Collaboratory by the NIH Common Fund through a cooperative agreement from the Office of Strategic Coordination within the Office of the NIH Director. This work was also supported by the NIH through the NIH HEAL Initiative.

July 1, 2021: NIH Collaboratory Leadership Asks, ‘Is Learning Worth the Trouble?’

Posted on by Karen Staman

Cover of the New England Journal of MedicineIn an article published today in the New England Journal of Medicine, Drs. Richard Platt, Adrian Hernandez, and Greg Simon of the NIH Collaboratory discuss barriers to healthcare system participation in embedded research and strategies for improvement.

“We advocate creating a robust national [embedded pragmatic clinical trial] capability to generate evidence to guide decisions by patients, clinicians, health systems, and regulators and respond to urgent national health crises, like COVID-19 or the opioid crises,” the authors wrote.

The article recommends a 4-pronged strategy that researchers and funders should consider to increase healthcare system participation in pragmatic clinical trials:

  • Reimburse for the additional costs of trial participation.
  • In some highly engaged systems, support permanent, reusable infrastructure.
  • Offload research-specific tasks to minimize burden on sites (such as IRB oversight, obtaining informed consent, and mailing medications to participants).
  • Assign and promote reputational benefit for these activities.

In another perspective piece by Simon, Platt, and Hernandez published in the April 2020 issue of the journal, the authors explored why randomized A vs B comparisons remain uncommon in clinical trials.