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The Patient Journey: Understanding Clinical Trials From A Patient Perspective

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Patient Centricity

Organisations are waking up to the crucial role patient-centricity plays in the successful outcome of clinical trials. However, while many companies are talking about the importance of being patient-centric, very few have an actionable strategy to address their practices. 

If we fail to build clinical trials around patients’ needs, the consequences can be severe. We face patients withdrawing from studies that are incompatible with their lives and schedules, and potentially feeling undervalued and unsupported during an extremely challenging time. Not only does patient drop-out carry heavy financial implications, but the cost to an organisation’s reputation can be steep too. 

Unhappy patients may vent their frustrations on social media, or share within patient advocacy forums, which could impact others’ willingness to participate in studies in the future.

In order to deliver a truly patient-centric process, we must understand the experience from the patient’s perspective and develop clinical protocols accordingly.

Treating Patients As Individuals

One of the most common challenges clinical organisations experience is not being able to recruit or retain enough patients to produce viable results for a clinical study. Often, this is because the study has not been designed with the patient’s needs in mind.

When it comes to designing a trial, we must consider what the experience will be like for the patient. This means thinking about how their life will be impacted by the trial and where their participation sits within their broader, day-to-day considerations. Of course, a patient’s existence does not start and end with their involvement in the trial – each of them has work, family and personal needs, concerns and commitments that may be far more important to them than their ongoing participation. If their involvement is to continue when they encounter difficulties or inconveniences, or even begin in the first place, the study must be adaptable to suit their requirements.

To improve patient experience during clinical trial participation as a whole, we need to look at every aspect of how care is delivered, including communication and environment. Efficient processes that deliver the required outcomes are critical components of a clinical trial, but these alone are not enough to deliver an excellent patient experience. 

Organisations must listen to patients, their families, and their caregivers to understand how the conditions of a clinical trial will impact them. This includes what access needs they have, what their time restrictions are, where there may be concerns around logistics and finance, and more.

Providing a positive experience for patients starts with treating each of them individually and respectfully, ensuring they receive the right care and attention, at the right time, in the right way for them.

Empowering Patients

The way patients approach their health and treatment has changed dramatically in recent years. People no longer simply follow a doctor’s instructions with complete trust. Many have become more active in researching and understanding their conditions, and want to be involved in making decisions about their own health.

It is vital for clinical organisations to empower patients by giving them access to the information they require while respecting the opportunities and choices they have. Patients can easily and readily research what trials are available to them through initiatives such as Be Part Of Research in the UK, and they’re more likely to choose trials that take their individual needs into account. Patients are now far more knowledgeable and better informed than many organisations give them credit for, and they are eager to be involved in shaping products and processes.

Too often, new products are created or clinical processes are changed without gathering patient input. This often leads to inadequate solutions and patient disengagement. In order to improve clinical trial outcomes for everyone, we must include patients and caregivers in the development of any solution, treatment, or digital strategy if is to be truly patient-centric

Solving Patients’ Problems

In looking at how we can solve problems for patients, we often solve problems for the clinical trial at the same time. Innovations in mHealth, for example, allow us to find innovative technological solutions for a range of issues that might previously have derailed a trial.

Patients increasingly expect the same level of control in a clinical trial setting that they would have in any other health situation, such as the ability to choose when and where to attend an appointment via apps and online platforms.

Technology, however, always works best when combined with human connection. Through building relationships with patient associations and advocacy groups, we can gain insight into the lives of patients with a specific condition, and hear from real patients and families about how we can work to make their lives easier. For example, one parent of a patient in a paediatric study mentioned to us how overwhelming they found all the different payments that were involved, and this has enabled us to design an app that will manage all payments in one place.

Advancements in technology are also now enabling more and more trial procedures to take place at home, minimising the need for patients to make long journeys to and from research sites. Being aware of how new opportunities like this can be leveraged for the benefit of individuals and clinical trials rather than continuing with established procedures because “it’s how it’s always been done”  is a vital move towards patient-centricity. 

In Summary

By engaging patients and their families and/or caregivers from the beginning of the clinical study design, and looking at how new technologies can be used to reduce travel and up-front costs, trials can be created that will attract and retain more participants, and operate with more efficiency.

More and more, the key to the success of a clinical trial lies in making patients feel like they are being treated as people and not just as patients – or worse, as data. In a busy clinical environment, it is easy to overlook the importance of genuine human connection, particularly when we are under pressure to deliver results quickly and get a drug to the market. However, we mustn’t lose sight of why we are trying to get these drugs to market in the first place.

By engaging patients in all processes which impact them, and ensuring we fully understand their experience of participation, we have a much better chance of producing positive results for everyone.