If I were not personally and professionally involved in clinical trials myself— if I lacked the experience and navigational knowledge to fall back on, and if I did not possess the wherewithal and determination to pursue answers to my questions— there is no way I would ever participate in clinical trials. I don’t have the patience. It feels cumbersome and is burdensome.
Like many of you, my experiences with external call centers have been underwhelming at best. Unfortunately, this includes my perspective as an advocate for enhancing diversity in clinical trials, as well as on my own behalf as a patient/participant. The obstacles encountered have led to a host of frustrations. (Here is what has been routinely missing with themes in bold):
- What’s the 411? Finding a number to call in the first place!
- Anybody there? Getting hold of a live human and instead, reaching a recording from an answering service requesting that caller’s leave their name and contact information for a callback that may or may not happen
- Just answer my question. Being able to get study-specific answers because the answering service is set up to only refer callers to the caller’s local clinical site for more information (and again reaching the coordinator’s voicemail at the site)
- Am I in or out? Being able to get pre-screened on the first try (first call) rather than at some later time
- Taking my sweet time. Being able to speak with someone who was 1) knowledgeable about the study in question, but 2) also courteous, engaging, and not in a rush to get a caller off the phone so they could move on to the next one
- Are you speaking from experience? Feeling comfortable and connecting with operators who demonstrate authentic interest and concern about the human component of participating (rather than merely the mechanics of enrolling patients)
From the outside looking in, call center operations provide precious little encouragement to participate in the way of customer service, and too few early encounters people can genuinely feel good about. The most apropos comparison that comes to mind is trying to get through to the DMV, and that’s being generous.
Once, there was a time that I was placing a call to a clinical site to make some preliminary inquiries on behalf of a patient. ClinicalTrials.gov had listed the Principle Investigator as the point of contact. He actually answered the phone with impatience and outright hostility, annoyed that I had called, demanding to know why I was calling him, and how I had gotten his number. It was horrifying. I followed up and did not let it end there. But I digress.
As a rule, it is entirely too difficult for the average person to locate studies or the call centers that support them. It is too difficult to identify and to grasp the inclusion/exclusion criteria (due to the medical jargon) that would precipitate making such a call. And it is too difficult to speak with a live person who can clarify early clues as to what’s involved and on which a caller will base decisions about participating.
The call center must be viewed as an integral component of the clinical trial experience. Not ancillary to it. From the end-user perspective, call centers have routinely been so problematic that I have come to believe that— done poorly— they actually do more harm than good.
The fact of the matter is that call centers often provide the first impression of any study. If attention to detail is lacking, call centers can actually turn candidates off before they’re even screened. If callers feel as if their time and interest are taken for granted... if callers don’t feel respected and heard during the call, this brief encounter can become the last and will be an indictment of the industry and clinical trials as a whole.
To emphasize this point, it is in response to these experiences that we began providing a call center feature for our Clinical Ambassador clients to enhance patient recruitment when we were contracted to provide. We understand first-hand how critical it is to connect with people on more than a superficial, mechanical level. We recognized just how much this first encounter can be their introduction to the clinical trial process, sets the stage for the patient experience, and for many people of color in particular, is a critical building block of trust.
The importance of offering expanded hours of operation cannot be overstated. Among underrepresented patient populations, a significant percentage of the communities we seek to engage happen to work second and third shifts. These callers can encounter strict rules at work regarding the use of their cell phones and where personal calls can take place. Being cognizant and accommodating regarding the times that people are able to reach out is important also.
We train our Ambassadors to be familiar with the parameters of specific studies and to be ready to have real conversations about what it’s like to participate in a clinical trial— from the patient perspective. We have used our call center to help manage expectations so that otherwise viable candidates don’t get inaccurate impressions about what’s involved and get frustrated or feel otherwise unprepared for study participation and drop out.
Should callers choose to enroll in a study, those who have opted in have access to Ambassadors who stand ready to act as their advocates and on whom they can call every step along their participation journey. And not only do our Ambassadors assist callers by pre-screening for contracted clinical trials, we also perform study searches for “outside” studies when the I/E criteria of the original trial are not a suitable match for them and have a list of additional resources ready to share.
The rapport created from the get-go means that callers also refer members of their families, coworkers, and community members to the call center. Our contacts have reached out to us to mitigate logistics such as transportation and daycare when they have technical difficulties with their diaries (we have helped troubleshoot issues with tech support as needed), when they have concerns about an upcoming procedure, and even when they wanted to report not being treated well during their last visit. Peace of mind and someone to speak to means the difference between someone staying in a study to completion versus being lost to follow-up.
Site staff and typical call centers have neither the time nor the finesse to hold hands with participants. Clinical Ambassador enjoys being relied upon to be a reassuring voice for our callers. We make a point of letting them know that they can discuss anything related to their participation with us and that they will get nothing but straight-talk in return. We also escalate issues to clinical site administrators on participants’ behalf so that sites can have the opportunity to address problems as early as possible before patients get so frustrated that they drop out.
At Clinical Ambassador, our remit is addressing disparities in participation and advocating on behalf of equitable access and representation in clinical trials. In the interest of cultural sensitivity, our boutique call center takes the time to nurture relationships and allow interpersonal dialogues that address issues ranging from basic education about clinical trials to historical distrust to specifics on a study-by-study basis. As a result, communities of color who experience disproportionate disease burden and underrepresentation in clinical trials in parallel come to better understand participation in the context of diversity, equity, and inclusion.
Being responsive to a broader spectrum of participating candidates and allowing all to feel greater comfort about the unknown— in what can effectively be a foreign environment— is critical. The best call centers are those prepared to field queries from callers with a range of familiarity, that only hire operators who blend being personable with professionalism, and those that can be most accommodating to callers with physical/health or technological limitations.
Of course, there are call centers set up to collect information about patient experience and side effects in particular. But if patients find that their call center encounters have been more mechanical and impersonal and less than pleasant to that point, potential data about drug reactions will likely be incomplete at best because it may go unreported.
The take-home message is that there must be attention paid to “the small things.” In my experience, “real people” respond most favorably and are more likely to enroll (or remain) in a clinical trial when they feel confident in the people and the process, in what’s expected of them, and when they have a solid understanding of what they can expect from those involved.
From my experience, people who use call centers are interested in knowing whether they qualify, they desire a better understanding of study requirements, may need help troubleshooting technical issues, and just need reassurance that they can trust what they’ve agreed to.
If any call center is not prepared to implement exemplary customer service, to be accommodating and to meet callers “where they are” regarding their knowledge, attitudes, and beliefs, and if they are not actively pursuing the balance between the technology of decentralized clinical trials and humanizing the patient experience, then don’t bother.
Allison Kalloo, MPH