Putting patients at the center starts with trust

A few years ago, we wrote a blog series for ACRP in which we focused on patient centricity in clinical trial design, recruitment, and execution. Over the next few months, we’ll be taking a second look at those blog posts, sharing updated versions on our own blog. Here’s an update to the second in that series. 

A recent Gallup poll revealed some tough news for pharma: out of 25 industries, the pharmaceutical industry is now the most poorly regarded in Americans’ eyes. Americans are more than twice as likely to rate the pharmaceutical industry negatively (58%) than positively (27%), and trust in the industry is lower than it has been in the recent past. 

At Antidote, we’re in the business of helping patients find and take part in medical research — much of which is conducted by pharma companies. In the area of clinical trials, trust is absolutely essential. Historical harms against communities of color and other underrepresented groups has eroded that trust — as has the “guinea pig” fallacy. 

But research shows that, while trust in the pharmaceutical industry has eroded, trust in research and the doctors that conduct it has actually improved. A survey by Research!America showed that the number of people who cited trust as a barrier to clinical trial participation decreased by 15 percentage points from 2013 to 2017. 

Against this backdrop, we surveyed nearly 4,000 patients to find out what would make patients who take part in research feel like partners, not just participants. We asked the question directly: “what would make you feel like a partner in research?” Across all conditions, talking with the doctors, clinical trial coordinators, and nurses involved in the trial was most important to patients. 

In our last examination of trust for ACRP, we talked about the importance of patient communities as a way to reach patients with important messages about research through trusted sources. This remains true, of course, but our findings show that we also need to bolster the relationship between patients and healthcare providers to improve research participation. 

One way to do that is by improving patient/researcher communication around trials. To enhance these conversations, we’ve pulled together a list of 15 questions patients should ask when considering a trial — and doctors running trials should be prepared to answer. These include: 

  • What is the goal of the study? 
  • Will I be reimbursed for my expenses? 
  • Does the study involve a placebo? 
  • How will my privacy be protected? 
  • What happens if my condition gets worse during the trial? 

Historically, a lack of interest from patients has been included on a list of barriers to driving research participation. Our survey findings suggest, however, that patients are interested in being a part of research, they just need to be approached in the right way. With trust at issue — particularly with regard to the pharmaceutical industry — transparency about research opportunities is an important part of the “right way” to talk to patients about research participation.