MINNEAPOLIS – In a significant departure from long-held traditions in U.S. healthcare, Gillette Children’s in St. Paul is actively working to bolster public confidence in medical research by compensating patients and their families for their crucial involvement. This innovative approach, which challenges the long-standing taboo of paying individuals for their direct contributions beyond mere reimbursements, positions Gillette as a trailblazer in integrating lived experience into the scientific process. The hospital’s pioneering efforts have garnered national recognition, being highlighted in a recent issue of the prestigious journal Pediatrics as a model for other institutions to emulate.
Historically, the practice of compensating patients for their participation in clinical trials for experimental treatments or drugs has been minimal, typically limited to travel reimbursements or small gift cards. The prevailing concern was that financial incentives might compromise the integrity of the research, potentially leading participants to misrepresent their experiences or take undue risks with their health. However, Gillette Children’s contends that by paying patients and their families for their unique insights and advisory roles in shaping research, they can circumvent these ethical quandaries and, more importantly, mitigate the inherent biases that can influence academic research.
Addressing the "Bias of Academic Research"
Rhonda Cady, the leader of Gillette’s health services research, articulated the fundamental issue with traditional research paradigms. "The bias of academic research is, ‘What is going to get me funded? What is going to get me tenure?’ Not, ‘What is going to improve the health and quality-of-life outcomes of the person living with this condition?’" she stated. This observation underscores a critical gap between the priorities of researchers seeking funding and career advancement, and the lived realities and needs of individuals navigating chronic conditions and disabilities.
The program at Gillette is strategically designed to bridge this divide, aiming to restore a sense of trust in scientific endeavors that has been eroded in recent years. The COVID-19 pandemic, with its accompanying debates over vaccines, mask mandates, and public health measures, contributed to a significant decline in public confidence in scientists and scientific institutions.
Declining Public Trust and the Path to Recovery
According to polling data from the Pew Research Center, the percentage of Americans expressing little or no confidence in scientists rose from 12% in 2020 to 27% in 2023. While this trend has shown some signs of reversal, public skepticism towards scientific pronouncements remains higher than pre-pandemic levels. Gillette’s initiative is seen as a proactive step towards rebuilding this trust by making the research process more transparent, inclusive, and responsive to the needs of the community it serves.
Adenike Chon, a resident of St. Paul, shared her personal experience as a parent of a 17-year-old son with a disability. Her involvement with Gillette has provided invaluable guidance on numerous research studies. She recounted how her feedback was instrumental in expanding a study on a new wheelchair design, ensuring it considered the diverse needs of children across different age groups and developmental stages. Chon firmly believes that incorporating patient and family input into the research design phase will lead to more robust studies and more reliable outcomes, ultimately fostering greater public confidence.
"You know what happens when you don’t do that?" Chon posited. "Research programs fail. Devices fail. You have to do research over when you find out you did it wrong, which ends up costing more." Her statement highlights the practical and financial implications of neglecting patient perspectives, emphasizing that upfront investment in inclusive research design can prevent costly setbacks and redesigns later.
A New Model for Patient Engagement: "Lived Experience" Partners
Gillette’s program, which formally hires "lived experience" partners, represents a significant evolution in patient engagement. These individuals are not merely subjects of research but active collaborators who help researchers define study objectives, refine methodologies, and evaluate outcomes based on their intimate understanding of living with specific conditions. This approach is grounded in the principle that those most affected by a condition are best equipped to advise on how research should be conducted to yield meaningful results.
To date, 42 patients or their relatives have formally joined Gillette’s roster of consultants for research initiatives, with 20 actively participating in ongoing studies. The hospital treats these individuals as independent contractors, compensating them at an hourly rate of $35 or more. This compensation serves a dual purpose: it acknowledges the value of their time and expertise, and it elevates their status within the research process.
Haley Brunelle, Gillette’s coordinator for family engagement in research, explained the significance of this paid engagement. "Payment not only compensates participants for their time, but it gives them a status level in studies that researchers take seriously," she noted. To ensure a comprehensive range of perspectives, each research study at Gillette is mandated to include at least three "lived experience" partners.
Brunelle further elaborated on the philosophical underpinnings of the program, referencing the well-known disability rights mantra: "Nothing about us without us." She sees the paid partnership model as a way of "democratizing the research process," ensuring that the voices and experiences of those directly impacted by medical conditions are central to the scientific inquiry.
A Deeply Personal Impact: Kari Pederson’s Journey
Kari Pederson, a Gillette patient for over five decades, exemplifies the profound impact of this inclusive research model. Diagnosed with cerebral palsy at the age of 3, a neurological disorder that significantly affects muscle tone, movement, and posture, Pederson became so deeply involved with researchers at Gillette that she ultimately served as the lead author of an abstract presented at a national conference.
The abstract focused on fall risks, offering a unique perspective informed by the lived experiences of individuals with cerebral palsy. Pederson’s contribution shed light on what individuals with this condition perceive as effective safety measures and what they find to be undesirable or ineffective.
"I think it’s really affected the culture of Gillette’s research," Pederson remarked about the lived experience program. "Because they really care about the voice of the patient, but there wasn’t a vehicle for that voice to be shared." Her statement underscores the transformative power of creating formal pathways for patient input, moving beyond passive participation to active collaboration.
Broader Implications for Medical Research
The model being pioneered at Gillette Children’s has far-reaching implications for the future of medical research. By valuing and compensating the lived experience of patients and their families, institutions can:
- Enhance Research Relevance: Studies are more likely to address the most pressing needs and concerns of patient populations, leading to interventions and treatments that are genuinely beneficial and usable.
- Improve Data Quality: Insights from individuals with direct experience can help researchers design more sensitive and accurate data collection methods, leading to more reliable results.
- Foster Trust and Transparency: Openly involving patients as paid partners can demystify the research process and build greater public trust in scientific findings.
- Reduce Research Waste: By ensuring that research questions and methodologies are well-aligned with patient needs from the outset, the likelihood of costly failures or the need for extensive rework is diminished.
- Promote Health Equity: This approach can help to address historical inequities in research, ensuring that the perspectives of marginalized communities are not overlooked.
The integration of "lived experience" partners represents a paradigm shift, moving from a paternalistic model of healthcare research to one that is truly collaborative and patient-centered. As other institutions begin to adopt and adapt Gillette’s model, the landscape of medical research may well be transformed, leading to more effective, equitable, and trustworthy scientific advancements.
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