When it comes to accessing clinical trials, patients need more. So explains a newly released report from the Global Alliance for Patient Access.
The report summarizes a recent meeting of international patient advocates from the rheumatic and musculoskeletal disease community. Advocates highlighted best practices in clinical trials, such as consulting patients as partners from the earliest stages. They acknowledged the value of registries and plain-language materials, which can make trials more accessible to patients. They recognized clinical research’s power to radically improve patients’ lives.
They were also frank about the challenges that persist. As the report explains, trial enrollment continues to be onerous in many cases. Travel, scheduling and incidental costs can deter participants. Patients, who are the true experts in their own diseases, are sometimes consulted too late in the process. And diversity is sorely lacking among both trial investigators and participants.
The report’s messages are timely. And they ring true far beyond the rheumatic and musculoskeletal disease community.
Clinical Trials Access on a Global Scale
Today, clinical trials are underway in 221 countries and all 50 U.S. states. They elicit more than $160 billion annually in research and development. And, due to the highly publicized development of COVID-19 vaccines, people across the world now recognize clinical trials’ impact on public health and individual lives.
That realization presents us with a moment in time, an opportunity to collectively look ahead and ask “what if?”
- What if clinical trials actually reflected the diverse populations served by the treatments they test?
- What if public-private partnerships blossomed, fueling more research and scientific inquiry for the patients who still lack adequate treatment options?
- What if more health care providers directed their patients to clinical trials, and clinical trial navigators were more readily available to guide them through the process?
- What if clinical trials access truly became a global public health priority?
It is incumbent upon advocates to turn these possibilities into reality. Clinical trials access is, after all, the most fundamental access challenge. Without robust enrolment and vigorous research, no other access barriers even come into the picture. Patients can’t fight for a treatment that doesn’t exist.
Together, we can improve clinical trials access through strategic policy changes that engage all stakeholders. Examples include:
- More investment. Advocates can urge more public-sector commitment. About 90% of current clinical trials investment comes from life sciences companies.
- Improved enrollment. Policymakers can offer grants and tax credits for trials whose study design and enrollment targets prioritize diversity. Health care providers can likewise be incentivized to guide applicable patients toward clinical trials opportunities.
- Greater awareness. Public health entities can develop public awareness campaigns to elevate the importance of clinical trials participation.
Better treatments, new cures and hope for a better quality of life all begin with clinical research. And improved access to clinical trials begins with advocating for policy change.
This guest piece is reposted from the Global Alliance for Patient Access blog.