Q&A: Human touch remains critical for the patient experience in trials

As the clinical trial industry is improving its patient-centric approaches in research, the rush to get over the finish line might negatively impact patient experience. Participation in a clinical trial might be an additional burden to patients who are trying to navigate their lives with a disease, especially if the trial site is difficult to travel to. 

In an exclusive interview, Kuno van der Post, chief revenue officer at Meeting Protocol Worldwide, a meeting planning service for clinical trials, discusses why it is important to take the patient’s perspective into account. One of Meeting Protocol Worldwide’s divisions, Scout Clinical, acts almost as a concierge for trial participants and takes care of the administrative burden, such as flights, hotels, and visas. 

van der Post shared his thoughts on the importance of human touch in clinical trials. While technology eases clinical trial conduct, the faceless entity may not improve overall patient experience and participation in a study.

Kuno van der Post: The first thing is that they are in such a rush to recruit. The overarching impetus is that CROs are under pressure from the pharma companies who are under pressure themselves. The edict is that you have to do a lot more with a lot less. Every year, the research budgets are under extreme pressure, but the expectation for output and success is far greater every time. These two opposing forces put pressure on the researchers, whether they're in a CRO or in a pharma company. 

The quality of a patient is not as optimised as it could be. It is rather an objective view, and I do not want that to sound impassionate. But if you look at some of the work that has been done with artificial intelligence (AI) companies that are now looking at how to hit the sweet spot in terms of the people that need to participate in your trial, they're becoming very successful; for example, companies like Deep6 AI. They are shortening the recruitment period, but they are also finding a better shortlist of ideal candidates. 

Also, I think there needs to be a bit more of a human touch. There is a bit too much of a telesales approach to it. These big recruitment houses will often just blast away and hammer through, but there needs to be more quality in the design of that operation. 

Kuno van der Post: Let’s say that you are suffering from a chronic disease and may need specialised transport. It is not just simply walking out of the house, jumping into a car, getting to the site, and claiming petrol expenses. You might be infirmed or incapacitated. You might need oxygen supplies or ambulatory support. The transport might not just be for you; it might be for your caregiver, or your caregiver might not be fully able-bodied. 

There are all these layers of complexity that require a lot of management. There are quite a few companies that are trying to approach this with technology. The technology is easier to get it right but what really takes time is the humans that need to be trained and kept optimal to deliver the high-quality service consistently for a long period of time. This is not something that is easy, but it sounds like it could be commoditised. A lot of sites will tell you that they can offer that service, but their core competency is not around a concierge or white glove approach to getting somebody from their home to a site.

Kuno van der Post: Yes, and to that point about why we are more human than tech in terms of proportionality as a company, it is by design. We were running clinical trials in Brazil and Chile a few years ago and we needed to recruit an indigenous population. To go and find them was an expedition because you are going into areas of the Amazon where they have not seen many Westerners. They are still indigenous people living indigenous lives. To take somebody from that and put them in a first-world city is a huge culture shock. We have patient navigators and patient liaison staff who are trained, but we also do it on a study-by-study basis. We look at what the protocol is and then we look at what we feel are the anticipated tough hurdles, we semi-rehearse that and train our staff to be ready for it.

We have also brought a family of Hasidic Jews from Israel over to the East Coast of the US for a rare disease study. That might not sound too difficult considering that the Jewish community is very predominant on the East Coast, but Hasidic Jews have a very tight community network. We had to find the right place to put them, and it was not just a case of finding a nice accommodation. We had to think through not just about the community, but also if there are the right types of shops or butchers and if that is the right type of community that is open to receiving these people on a temporary basis. We also had to convince the head of the community that it is okay to let their community members go. 

This is where you need humans as there is no amount of technology that you can throw at this. Layering on top of that, somebody is in pain. If you are suffering from a disease, you are full of emotions that range from frustration and anger to fear and regret. How does shoving technology, which is a cold, faceless and unemotional entity, help the situation? It might make the job easier at a lower cost, but in no way does it enhance patient experience.

Kuno van der Post: We work across the whole spectrum of the industry. We work with large CROs, have big enterprise engagements with the top five pharma companies and we also get repeat business from small virtual biopharma companies. We have worked with 1222 companies, and we are currently running just over 520 active trials. The technology that we provide is in conjunction with our service. One unique thing about us is that we do not charge anything if our [staff] or portal technology are not being used. You do not pay for anything in the interim. 

A lot of companies, especially in the tech space, want to develop these annual recurring revenue models, where set fees are incurred monthly. As I said in the beginning, the industry is under pressure to do more research, more output and more quality with less funds year over year. One of the differentiating things that is appreciated by our customers is that when they are not using our services or technology, they do not pay anything. It is fee as incurred model which is far more cost effective, and it lends itself better to what the industry is going through. 

There are broadly two ways that we work with pharma and CROs. One way is a study-by-study model, which is a transactional business model; as the need arises you get engaged. But we also work with companies that decide to be committed in their arrangement with us and want a more embedded model. 

Kuno van der Post: What is odd to me is that even though we get lots of superb testimonials, very few of them bring us in early into the study planning stage. That is crazy, even when you are deciding in which countries the trial will be deployed in. For example, in the US you can use all forms of digital reimbursement, but in France it is a paper-based manual system. Why would you not get a company like us upfront in the planning process?  

One of our biggest clients is bringing us in to help with strategic initiatives around greener transportation models and zero barriers for inclusion, meaning we make sure that there are no financial barriers. For example, if you are from a low-income family without your own transportation, you might not have to lose cash of $200-300 to pay for a taxi to drive you to a site that is 80 miles away.  

It is important to ensure that you are not relying purely on technology. It is not just a numbers game. You have these call centres hammering away trying to find the right patients, but they need to be a bit more surgical in their strikes.