Patient Engagement in Clinical Trials: 3 Pillars of Success 

Patient Engagement in Clinical Trials: 3 Pillars of Success

The importance of patient engagement often gets overlooked. Ensuring regulatory compliance and working towards data excellence are surely important, but the success of any trial depends on having enough participants collaborating until the end. Patient retention should be a goal as important as quality of data analysis.

In this article, we present three pillars of success for patient engagement in clinical trials, based on our years of experience conducting patient-centric clinical trials. In a nutshell, designing and conducting clinical trials with patients’ needs in mind is the best strategy for improving patient engagement.

Challenges in Patient Engagement in Clinical Trials

In some of our other articles, we have explored the challenges in patient recruitment, which can be a hurdle faced at the starting point of a trial. However, after the recruitment process was successful, effort is still required to keep participants engaged and the trial running.

Clinical trials with high dropout rates are unlikely to yield good quality data. Unfortunately, this is a situation that happens with many studies that otherwise would make relevant contributions to medical research and drug development.

If participants feel that participating is taking too much of their time or disturbing their routine more than what they can afford, they will probably opt out. Not feeling supported enough and losing hope are other reasons for lack of patient engagement that hinders clinical trials. By focusing participant engagement efforts in these three areas that we explore below, these challenges can be avoided.

Patient Engagement in Clinical Trials

#1 Technology

Technology is a helpful resource to enhance patient engagement in many ways, especially when it comes to reducing patient burden. We often think of data management and analysis software to help the work of researchers, but there are many other tools which can improve the patient’s experience directly. Here are some ways technology can reduce patient burden and increase participant engagement:

Remote monitoring: through remote monitoring devices, researchers have access to real-time data collection with minimal disturbance of the patient’s routine

Telehealth: consultations conducted via teleconferencing allow patients to participate from the comfort of their homes, reducing the need for travelling and commuting

Mobile apps: mobile applications can help patients stay engaged in a trial the same way they help with other daily tasks, by providing information about the trial, tracking symptoms and reminding of appointments and medication times

Online communities: patients taking part in the same trial can connect online, share experiences and give each other support, which help them to stay engaged

Data transparency: digital data collecting allow patients to have more direct access to their own data and to how it is managed, increasing their trust on the healthcare team responsible for them

#2 Personalized Support

While technology can surely enhance the patient’s experience in many ways, it is important to remember that we are still dealing with humans. Patients may be discouraged from participating if they do not feel that they matter as individuals and are treated as mere research subjects. These are some ways of offering personalized support throughout the trial that shows participants that their concerns are as valid as all the research data, and help with their engagement:

  • Designing patient-centered trials: decisions such as appointment scheduling and site selections can be made with the patient’s preferences in mind
  • Constantly checking-in with them and assessing their physical and mental health, being available to help them with health concerns that are not directly related to the trial
  • Providing clear and effective information and education content, to show that their awareness matters and the research team is mindful of the human beings that are central to the trial
  • Being flexible with trial design and scheduling and ready to adapt to individual needs and preferences at any time

#3 Quality of Life

Ensuring that patients have the best experience within the clinical trial should not make the research team forget that they have a life out of it and that their quality of life involves other things aside from addressing their disease or health conditions. The best approach is to find a balance between keeping them hopeful for a new successful treatment while also acknowledging that they are more than a patient dealing with symptoms.

Involving the family and caregivers is a good way to show patients that the research team is mindful of their well-being and concerned about their participation-life balance. When they are not actively participating, support from well-informed relatives and friends can be crucial to their engagement.

Sharing success stories of patients with the same condition and including financial compensations when necessary are other ways to show patients that all aspects of their quality of life are being considered, even if they do not relate directly to the trial. Ultimately, it is about creating a balanced experience that motivates engagement in more than one way.