What Is the Patient Journey and Why Does It Matter in Clinical Trials?

Recently, TrialHub released Reimbursed Drugs – a module that provides data analytics about drug reimbursement in a growing number of countries. Our partners, far from narrowly focused on reimbursed drugs in and of themselves, immediately wanted to know more about the patient journey. 

The big picture: not just which drugs are reimbursed and what part of the cost is covered but at which point of their treatment would patients be prescribed these drugs

This is part of the patient journey that has a significant impact on trial design. The patient journey is not just a buzzword in the industry right now but then, what is it exactly? 

What is the patient journey?

The patient journey or patient pathway refers to the way a patient gets from symptoms to diagnosis to finding a treatment that works for them. It’s disease- and country-specific and it includes information such as:

  • Who is the doctor they go to when they first develop symptoms?
  • Who diagnoses them?
  • How many doctors does a patient see before getting a diagnosis? 
  • What is the first-line treatment?
  • When is the second-line treatment prescribed? 
  • Who prescribes it?
  • What are the disease symptoms that have the biggest impact on the patient’s quality of life?
  • What are the treatment side effects they struggle the most with?
  • At what point would a patient seek clinical trial participation?

These are some of the key points of the patient journey that clinical research and other industries are interested in. Patient involvement in clinical trials and patient-centricity (other topics that are widely covered these days) rely on patient journey data being available and accessible, meaning stored in a way that makes it easy to analyze and use. 

This is not just a feel-good narrative – it’s a key to designing the trials and developing the treatments that patients truly want and need

Why does the patient journey matter in clinical trials?

All of this maybe sounds a bit abstract or maybe it doesn’t make sense in the context of feasibility = country and site selection. If you are not convinced yet, let me give you some practical examples (both real and hypothetical) about why and how the patient journey impacts clinical trial outcomes. 

A partner of ours was working on a DCT, one of the components being home nursing. They believed that taking the trial to the patients’ homes would make for easier recruitment and better retention. 

Turns out, these patients because of the nature of their disease had to visit their doctors quite often. Over a long period of time, doctor’s visits had become a comforting part of their routine and made them feel heard and taken care of. Not only that but because of the cultural specifics in their country, people in their generation felt uncomfortable letting a stranger into their homes, even if that stranger was a healthcare worker. 

Needless to say, recruitment did not go well in this country. A lot of resources were wasted on a solution that patients didn’t need or want, despite the presumed convenience it brought. 

Now, imagine you’re working on a DCT and you want to make it easier for patients to report their outcomes without constant visits to the site. You’re thinking of incorporating the most innovative ePRO you could find that is both patient-friendly and data-conscious. 

Yet, your patients because of their age group or background or even cultural or religious specifics are hesitant to use technology. They could even be suspicious of your solution or not know how to use it. 

This is where the patient journey comes in. 

Knowing as much as you can about your patients ensures you create strategies that make sense in their particular situations. Trials should fit the needs of the patients they hope to recruit. I’d say, this should be the case as early on as the protocol development stage. 

The examples I gave were both about decentralized trials. But there are other scenarios that make the patient journey key. Our partners ask about who the treating physician is so they can go to these doctors and partner with them (they, the doctors, are sometimes different specialists than the ones who diagnosed the patients); they ask about second-line treatment because they want to know at which point a patient is eligible for their trial. 

A lot of decisions made at the planning stage of a study depend on knowing your target patients, what they go through medically, what their needs are, and how they define convenience. So, it’s safe to say that the patient journey is crucial. 

Where can this data be found?

It’s not easy finding out about your target patients. Their data is scattered and though EHRs are becoming more common, relying on them alone can be a dead-end. Even when the data is there, it’s not stored for the purposes of helping research and thus it’s not always very helpful. 

Other options include patient organizations and patient advocates or advocacy groups as well as KOLs and freelance clinical trial consultants like TrialHub’s country advisors network (CAN). They all hold important pieces of the puzzle, still getting in touch with them is not yet a scalable way to collect patient insights. 

For one thing, getting in touch with them can present an administrative hassle. TrialHub tackled this challenge through CAN, yet getting local experts’ insights even through CAN takes about 5 business days. For the time being, the patient journey is a challenge for all stakeholders. 

We are working on tackling this challenge as well. And though I can’t share much at the moment, if you are in need of patient journey insights – we might be able to help you find exactly what you need. Reach out to our team if you’d like to know more. 

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