What is the patient journey of people actively looking for clinical trials?

“85% of clinical trials fail to recruit and retain enough patients in order to meet their enrollment timeline” – a number which we see quite often in analyses, publications, or events presentations within the clinical research industry. With one-third of study budgets going into patient recruitment and hundreds of experienced patient recruitment vendors and experts working on solving enrolment challenges on a global level, why does this trend still persist and continue to prevent clinical trials from being feasible and efficient?

We’ve been hearing a lot about patient centricity and embedding the patient’s voice into every stage of the drug development process, but what exactly does this mean?

At FindMeCure we have always been close to people living with chronic illnesses thanks to our global clinical trial portal and the awareness work which FindMeCure Foundation has been doing together with Patient Advocacy Groups worldwide. Our experience revealed how many hurdles clinical research hides mainly because the real-life patient journey has not been taken into account or partially considered in a very late stage. This prevents patients from being able to access a relevant clinical trial and at the same time delays clinical trial timelines at a huge cost.

In the last few months, we have been mapping the experience of people with chronic and life-threatening conditions that are actively looking for clinical trials on FindMeCure in order to identify the key moments to be considered by those developing new therapies. If you are interested in all the findings, take a look at the study we have produced.

From symptoms to diagnosis

Getting diagnosed seems to be one of the biggest obstacles for many people out there. When it comes to rare diseases, for instance, the length of time from symptom onset to an accurate diagnosis is around 5-7 years depending on the country. A similar issue happens to people with some autoimmune conditions.

Thanks to the wide variety of technologies and tools that have been involved in the diagnostic process in recent years and the better knowledge doctors have gained on many indications, we enjoy a better picture in terms of statistics, i.e 43.55% have been diagnosed within 6 months of symptoms onset.

But how is the patient journey during this period important for clinical research professionals such as feasibility and patient recruitment experts? 

Critical moments to understand the experience of a patient with a particular condition and potential touchpoints include:

  • What is the point of entry into the healthcare system?
  • Which tests and procedures are usually performed in different countries?
  • Which healthcare providers (HCPs) will be involved in conducting these assessments?
  • Where do undiagnosed and just diagnosed patients look for information and support?

From diagnosis through treatment pathway

The treatment journey is a crucial stage to pay attention to in order to identify whether patients would be motivated to join a clinical trial and if so – when the right moment is for them to become aware of such an opportunity.

46.7% of the respondents in our survey report they have tried different treatment options within the standard of care in their respective country. The majority of people (61.5%) are not satisfied with their current treatment and this explains their motivation to look for an investigational therapy in clinical trials.

Questions to be taken into consideration at this stage are also crucial for finding out more about the experience of patients while being treated and how different it is from country to country.

  • Which specialists are usually treating patients with such a condition? 
  • Who may be involved in providing the study treatments?
  • Which are all the available treatment options that the patient may consider? 
  • Does the patient have access to reimbursed therapies?
  • Who may influence the treatment decision-making?
  • Where else the patient might seek information about different treatment options?
  • What is the disease and treatment burden for patients during their treatment pathway? Has their quality of life improved thanks to available therapies or do they need a better alternative?

This is a key moment to also identify what types of investigators might be involved who have knowledge of and interaction with such patients.

Why clinical trials?

As we expected, most of the respondents in our survey had not been referred and advised by their doctor to look for a clinical trial option. 77.9% say they have not even discussed this step during their hospital visits. One of the reported reasons is unawareness among doctors in the country which is a critical moment in the patient journey to be considered when planning clinical trials.

Also, assessing potential reasons why patients would be interested in taking part in a clinical trial is something that requires attention. “My treatment doesn’t work/stopped working”, “No available treatments”, “I can’t afford to pay for a treatment” or “Side effects of my current treatment” are some of the reported factors that motivated our respondents to actively look for an alternative in research.

The questions to be answered and dived into include:

  • Would patients in this country be motivated to take part in a clinical study?
  • What obstacles might prevent them from taking part, e.g. reimbursed available treatment options in place, no clinical trial awareness, patients not aware of their diagnosis, strong patient-doctor relationship, etc.?
  • Where are all of the places, venues, and times the patient might be able to learn about the trial opportunities?
  • Are there any Patient Advocacy Groups to help raise awareness?

It is also important to examine the patient-doctor relationship, as well as the patient-to-patient interactions and the interactions patients have with patient support organisations in order to gain a holistic picture of what the patient feels, experiences, thinks and how he or she behaves as a result.

To conclude

Looking at a chronic disease through the eyes of a patient is one of the most insightful ways of determining the patient’s most pressing challenges and needs and how to best implement them within the drug development process. The patient journey is always unique and might be different than what doctors initially think it is or might differ due to cultural factors from country-to-country.

How a patient (prospective research subject) navigates through the healthcare system and the touchpoints where they might learn about and encounter opportunities to get involved in a given clinical trial is the key to precision when it comes to planning patient recruitment efforts.

If you are interested in learning more about all patient insights and survey findings, you can download our study in just a few clicks. 

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