When patients are valued, respected, and listened to, clinical trials can be more patient-centric, meaning they are more appealing to patients in both their design and execution.
Patient experience has far-reaching implications, but very little is done to evaluate it. Generally speaking, the medical outcomes of a trial are given top priority.
Here is an overview of what patient experience means, the issues surrounding it in clinical trials today, and why evaluating and improving the patient experience matters.
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Clinical trials aim to assess medical treatments by studying their effects on patients’ medical conditions. For a clinical trial to go ahead, participants fitting specific criteria will be recruited. Feedback from study participants can influence not only the outcome of current clinical trials but future trials as well.
Patient experience can include perception of the treatment itself (comfort level or side effects), how satisfied they feel with the type and level of support received (whether that’s financial or practical), and how the trial affects their day-to-day lives.
Scientists who research new treatments and the medical professionals who administer them both have responsibilities when it comes to providing an excellent patient experience.
Although scientists develop the first version of a new treatment, medical professionals collect and share the clinical results and patients’ feedback. This information influences how treatments are adjusted before they can be approved.
Scientists and medical experts will evaluate the treatment being studied and identify its successes and failures. They will use this information to guide further adjustments or as proof that the treatment is safe and effective. But do they listen to participants’ wider concerns as part of this process?
A scoping review published in 2019¹ revealed that very little is currently being done to evaluate the patient experience in clinical trials. It found that there is no universal definition of patient experience, and when it is evaluated, the method used and questions asked are inconsistent. The review concluded that systematic evaluation of patient experience does not exist.
The review did find that where patient experience is measured, it’s generally very positive — but it is unclear whether this applies to all participants since many are not asked for their opinions at all.
Patient experience may be a low priority for researchers when it comes to assessing the efficacy of treatments through clinical trials, but obtaining feedback from participants is useful and should be encouraged. Here’s why:
Improving recruitment and retention
86% of clinical trials fail to recruit the number of participants they need². This results in trials being delayed or even canceled. The implications of a canceled clinical trial are profound for the researchers, sponsors, and participants, not to mention the wider pool of patients who will be impacted because important medical research could not be carried out.
Recruiting people to take part in clinical trials and keeping them on board throughout is vital for keeping costs down, avoiding delays, and obtaining useful medical data. Medical researchers who value the patient and listen to their feedback can improve trials and make them more appealing, increasing future participant recruitment.
Getting feedback about the treatment
Researchers look at the success or failure of treatments from a medical point of view, but not all medically successful treatments appeal to patients. Medical researchers who seek the patient’s feedback during and after a trial can gain useful insights.
Of course, patients typically opt for a treatment that has a high success rate, but there are other factors to bear in mind. For instance, potential side effects are an important consideration for many patients and can influence their decision-making. Researchers who evaluate the patient experience can find out about side effects and the impact of the treatment on day-to-day life.
Avoiding unreliable results
Clinical trials can take a toll on mental health; they can be intense, stressful, and time-consuming. What’s more, patients can pin a lot of hope on the outcome of a clinical trial, leading to increased anxiety and anticipation.
These emotional challenges can place extra stress on the body, possibly influencing the outcome of the treatment. There is also a risk that a side effect of trial participation is mistaken for a side effect of the treatment — or vice versa. This could make findings less reliable and risk unintentional harm to patients.
Researchers can reduce these risks and minimize the trial’s impact on patients’ mental health through close attention and effective communication before, during, and after the trial. Managing expectations and concerns can help patients significantly throughout the entire process.
Patient feedback is an important aspect of any clinical trial, yet it is often overlooked.
Finding people to participate in a trial and retaining them throughout the study are major challenges for researchers. But ensuring a great patient experience and understanding participants’ perceptions will help to improve recruitment and reduce dropout rates in future trials.
Besides improving recruitment, listening to the patient is essential for obtaining reliable and useful results. It can help researchers to obtain insights about the treatment that scientific data cannot reveal. Participants’ mental health is another important consideration. When the patient is valued and listened to, their mental health can be safeguarded and more reliable results obtained.
Ultimately, scientists and medical experts must take responsibility for patient experience and recognize its value.