Despite claims to the contrary, patients are more than willing to engage in industry-sponsored clinical trials, with altruism, access to new treatments and improved understanding of disease the main drivers for participation, says UK-based recruitment and retention specialist One Research.
Much of the company’s recruitment work has been for industry partners, and in discussing this with patients “we consistently see upwards of 85% registering their interest in joining the cohort”, One Research notes.
Registration rates “are and have been” consistent at this level since the company started its recruitment programmes, it adds.
While that does not necessarily translate into final recruitment rates, it “does show the keenness of these patients to be considered for clinical research”, the company points out.
Moreover, high registration rates mean enrolment can be conducted quickly and efficiently once suitable trials become available.
Science and Technology Committee report
One Research contrasts this experience with a “prevailing view” articulated in last September’s report on clinical trials by the House of Commons Science and Technology Committee.
This suggested that public cynicism about the motives and activities of the pharmaceutical industry was inhibiting recruitment to commercially sponsored studies in the UK, even though there were high levels of engagement in some areas such as cancer research.
“We note the apparent lack of public confidence in the pharmaceutical industry and are concerned that this may increasingly pose a barrier to conducting trials in the NHS,” the Committee stated in its report.
“Industry should act to regain trust lost through past examples of poor behaviour by engaging more effectively and transparently with the public in the future.”
Exactly the opposite
What One Research has found, through direct dialogue with “many thousands” of patients, is “exactly the opposite”, it says.
“As we have seen with our work with Novo Nordisk on their UK-wide Volunteer Outreach Programme, a clear pathway to clinical trials is welcomed by patients, and the presence of a pharmaceutical sponsor is far from being a barrier.”
Actual enrolment rates will vary depending on the type of trial and its location, One Research notes. But giving volunteers “a neutral space to have an unhurried discussion about clinical research will and does have a direct impact on both enrolment and attrition rates”, it stresses.
The company has explored motivations for clinical-trial participation through a nationwide sample of patients interested in late-stage diabetes research (958 registrants: 66% male, 34% female).
Most cited – by 34.2% of the poll – was altruism, followed by: improving understanding of diabetes (30.2%); access to new treatment (21.4%); curiosity about research (14%); and, with a marginal share, financial gain (0.1%).
“Although altruism is the most frequently cited, volunteers’ motives are often interwoven,” One Research commented. “Anecdotally, almost all are motivated by a desire to help themselves and others.”
Volunteers are out there
As the company observed, the same report from the House of Commons Science and Technology Committee referred to a 2011 survey commissioned by the Association of Medical Research Charities.
The AMRC survey found that 72% of respondents would like to have the opportunity to get involved in a clinical trial.
“This illustrates very well what we are finding in practice,” One Research said. “Committed volunteers are out there in large numbers.”