The results of a new public opinion survey conducted by Research!America sheds light on the perception Americans have of clinical trials and may hold the key to the patient recruitment problem. The survey found 86 percent of Americans felt their healthcare professionals should discuss clinical trials with patients diagnosed with a disease, and that those discussions should be part of their standard of care.
Three-quarters of the respondents felt taking part in a clinical trial was as valuable a part of our healthcare system as giving blood. The respondents were split on whether it’s important for everyone to take part in a trial if asked to do so. Forty-four percent agreed with the statement, while 45 percent disagreed. Another 12 percent were unsure.
But the most amazing stat to come out of the survey had to do with participation. Seventy-four percent of the Americans surveyed stated they would participate in a trial if they were asked to do so by someone they trusted. That number is staggering, especially when you look at the patient numbers that currently plague trials. We still have 11 percent of sites never enrolling a single patient, according to a recent study by the Tufts Center. That figure has not changed over the last 20 years.
And while the pharma industry spends upwards of $2 billion on patient recruitment every year, a recent survey conducted by SubjectWell found half of respondents were not aware of clinical trials. (In the Research!America survey, that number was 80 percent.) Only four percent reported having participated in a trial, and 57 percent could not even recall seeing any advertising for trials.
Why The Low Participation Rates?
There are many reasons for patients to not participate in a trial. The Research!America survey found 55 percent of respondents noting the lack of participation is due to a lack of awareness and information. That reason was followed by ‘too risky’ (43 percent), ‘lack of information about the process’ (41 percent), and ‘lack of trust’ (38 percent).
There is other good news in the survey. For example, nearly two-thirds of respondents (64 percent) stated a doctor or healthcare provider would be a reliable source for clinical trial information. Of course, that will only have an impact on trial recruitment if those health professionals actually take the time to educate themselves on trials and share the information with patients. For the most part, that does not seem to be happening.
There are likely many nurses and physicians who do not believe it is their responsibility to educate patients on trials, a belief that carried over to the survey respondents. Research!America found only 44 percent of respondents felt healthcare providers have the greatest responsibility in educating the public about clinical trials. Another 23 percent felt that responsibility rested with the government. Unfortunately, a 74 percent majority stated that neither their doctor nor any other health care professional has ever spoken to them about the topic of medical research.
A 2016 article by Anna Hrovat-Staedter of Forte Research Systems noted the top two barriers to patient participation in clinical trials are misconception and distrust – barriers that can be mitigated by having a trusted primary care physician make the recommendation.
A Noteworthy Shift In Attitudes
Many Americans remain unaware of trials and their purpose. When educated about them, however, they do see the importance these studies provide. Forty-four percent of participants in the Research!America survey felt clinical trial participation should be a routine health behavior, similar to getting an annual checkup. Men (48 percent) were more likely to agree with that assessment than women (39 percent). Younger Americans were also more likely to agree with routine participation in trials than the elderly.
The findings reveal a positive shift in public attitudes since a prior study of clinical trials was performed by Research!America in 2013. The percentage of Americans indicating they would be ‘very likely’ to participate in a trial increased 11 percent to a current rate of 37 percent. For those concerned about patient willingness to share data, the survey found 84 percent of respondents willing to share personal health information, provided there are privacy protections in place. That was a 10 percent increase over 2013. Forty-six percent noted they admire trial volunteers a ‘great deal,’ a nine percent increase over 2013.
The survey found patients are clearly getting more comfortable with digital platforms as well. The number of participants noting they would be willing to use technology such as apps, phones, and monitoring devices to share personal health data for clinical research now stands at 72 percent. Almost half stated they like having trial information, data, and results delivered to them via their phone, while 88 percent felt trial participants should have access to the results of clinical trials.
Is UPMC On The Right Track?
If the results of this survey represent the views of Americans as a whole, pharma and healthcare centers should be taking note. A primary factor keeping Americans from participating in trials clearly seems to be a lack of information coming from healthcare providers, and that is a shortfall that could be corrected rather easily. The problem isn’t that physicians are unaware of clinical trials, it’s that they don’t seem to have the time or desire to share that information with patients during their visits. This is a problem that technology could help to alleviate.
I am part of the University of Pittsburgh Medical Center (UPMC) health network and recently received an email asking me to join the UPMC/University of Pittsburgh Research Participant Registry (Pitt+Me). The registry is a voluntary database of UPMC patients who are willing to consider participating in research studies. The program involves sharing medical records for the purpose of advancing research and medical care.
Those opting to join the registry will receive regular emails containing research studies for which they may be eligible. That would include clinical trials as well as interviews or surveys that attempt to understand health or behavior. Matches are made based on information about patients contained in their medical records along with health areas of interest chosen by participants.
Patient recruitment and retention remain a problem for companies hoping to develop new medicines and devices. With the attitudes of Americans towards trials evolving, the methods by which we reach them need to be evolving as well. Involving physicians and other healthcare workers in the education process seems to be the best way to overcome fears and anxiety over them and have a trusted voice be part of the information chain.
The Research!America survey questioned 1,000 U.S. adults in July 2017. The survey was conducted by Zogby Analytics for Research!America and the Association of Clinical Research Organizations. The complete results of the survey can be seen here.