Part of what makes clinical trials efficient and successful are the smart decisions that are made about protocol design, site selection, staff training, technologies used, information provided and so on. Patients’ motivation for enrolment and perception of clinical trials play a key role in this decision making process, and therefore it is imperative that the pharma, biotech and medtech industry professionals have a clear understanding and grasp of it.

That is why Avoca Quality Consortium (AQC) carried out a patient survey which encompassed topics such as:

• Levels of confidence in the pharmaceutical companies and study teams
• Reasons for recommending or not recommending clinical trials to a loved one
• Motivation for participation
• Patient attitude towards healthcare providers
• How demographic characteristics and types of illnesses affect patient outlook

A clear understanding of these topics would greatly help pharmaceutical companies, CROs and study teams determine the right actions to surely influence clinical trial participation and improve the impressions given off by clinical trials. In this day and age, many impressive innovations in healthcare have occurred, resulting in patients developing increasingly high expectations of their healthcare and treatment choices. To meet these increasing expectations, smart study decisions and understanding become ever so vital.

The misunderstood

The survey uncovered that on average, patients did not feel that their healthcare providers understood their situation and what it was like to have their condition. Mean ‘perceived understanding’ ratings ranged from 2.9 to 3.4 on a scale of 1 (no understanding) to 5 (very good understanding). The strongest factor influencing the difference of attitude was Age and Marital Status. Those 76 years + and single and married individuals felt most understood, whilst those aged 31-45 or divorced felt the least. Interestingly enough, disease characteristics and history of clinical trial participation had little impact on patients’ thoughts. Many of those who didn’t feel understood stated that they don’t believe medical providers have time to understand them and that they disperse patient care amongst several people resulting in providers only understanding a ‘piece’ of the patient.

Motivation for Participation

In regards to motivation and reasoning for consecutive participation, surprisingly again, type and impact of medical condition had little significance. The top 3 reasons were: to contribute to science; learn more about their condition; and financial considerations. Medical condition as well as demographic characteristics did however impact motivation for initial participation. It was found that those with chronic and degenerative conditions were motivated by additional contact and access to superior medical professionals. Those mildly impacted by their disease were motivated by access to free healthcare and those limitedly impacted by their disease were motivated by payment.

To recommend or not to recommend

The survey showed that 67% of people would recommend clinical trials to a loved one. 29% said they were unsure and 4% said no. Those who would recommend said that it is because trial operations are in more sophisticated institutions and the benefits outweigh the risks. Those who said no exhibited concern about receiving ineffective treatment and placebo. They also declared mistrust and suspicion of the clinical research industry. Clearly then, an area which demands major work is patient confidence.

Confidence

The type of information that patients stated they were or were not confident in came as no surprise. The survey showed that the highest level of confidence was in information regarding the right to withdraw, procedures and possible benefits. The least level of confidence was in treatment alternatives, risks and side effects and doctors’ motivation. A more intriguing discovery was that patients generally had a good level of confidence in compliance, care and ethics of the site study teams. Scepticism came regarding the morality of pharmaceutical companies and the degree to which they cared about the patients. However, they also stated that their confidence increased when their opinions were accounted for during protocol and operational design. Their confidence also increased when there was clear transparency at every level during study implementation.

Although patient interest in treatment options has increased over the years, consideration of clinical trials as a favourable option is still not a popular enough notion. The survey carried out by AQC has shown that a major part of the problem lays in the fact that patients do not feel understood and have little confidence in the integrity of pharmaceutical companies. Clearly the healthcare industry needs to do more to incorporate patient voice in study design and more time must be devoted to developing patient physician relationships and communication.

Anna Nikitina

References:

Denise Calaprice-Whitty, Jennifer Byrne, Jeremy Gilbert. Bridging the Gap for Better Patient Engagement. 31 May 2017. 18th August 2017 <http://www.appliedclinicaltrialsonline.com/bridging-gap-better-patient-engagement?pageID=1&gt;.