Patients in Research: A Study From PatientRx
We conducted PPI to explore the current state of patient involvement in clinical trials, identifying key challenges and opportunities. The analysis aims to uncover the potential value of an AI assisted application in addressing these issues and enhancing patient participation.
The following survey was conducted across patient communities in the UK, USA, Canada, and Europe. Its goal was to understand patient perceptions, experiences, and pain points regarding clinical trial participation and to evaluate interest in pRxEngage system and patient needs. The survey focused on respondent demographics, perceptions of clinical trials, participation in clinical trials, and information accessibility. We want to understand the background of survey participants, explore patient views on importance, safety, and trust, examine willingness vs. actual participation rates, and assess the need for clear and accessible information. The survey has had 157 respondents to date, providing valuable insights into patient demographics, perceptions of clinical trials, participation rates, and information accessibility.
Respondent Demographics
58.3% of survey participants were females, 58.4% were between the ages of 45-64, and 72.2% reported having health issues.
Perceptions of Clinical Trials
High Importance & Safety Clinical trials are viewed as both important (8.14/10) and safe (7.83/10) for advancing medical research. Breaking Misconceptions Survey data shows patients believe clinical trials are just for serious illnesses, with 61% of responders sharing this perception. Strong Trust Levels Participants express high trust (7.53/10) in clinical trial information provided by researchers.
Participation in Clinical Trials
80.6% of respondents express a willingness to participate in clinical trials, but there is a significant gap between intention and action. Only 30.6% of respondents have actually participated in clinical trials. This gap is possibly due to lack of awareness, eligibility criteria, or concerns about risks and side effects.
Barriers to Participation
Travel distance and qualification requirements emerged as the top barriers, with 51% of participants citing each of these challenges. 43% of respondents struggled to find trials that matched their conditions or requirements. Equal proportions (32%) reported insufficient trial information or worries about potential side effects
Finding Studies - Primary Routes to Access Trials
84% use search engines, 51% use databases like ClinicalTrials.gov, and 41% use platforms like Facebook or Tik Tok.
Information Accessibility
There is a strong preference (91.7%) for a user-friendly platform that provides clear and accessible information about clinical trials. Most respondents (83.3%) believe that such a platform would make them more likely to join a clinical trial, (50% or more) suggesting that improved information accessibility may motivate participation.
The survey also asked participants about desired features for a clinical trial platform, and the results are:
- A section describing risks and benefits of each trial - 81%
- Information helping me to work out if I am suitable – 73%
- The ability to search by condition, location, treatment type -73%
- Easy-to-understand summaries of trials - 68%
- A section explaining the support I will receive - 68%
- A name and contact details for a centre running the trial – 65%
- Information helping me work out if I would be able to cope with the trial – 54%
We have listed a few key conclusions gathered from the survey results:
- There is a generally positive perception of clinical trials, but significant barriers prevent willing participants from taking part.
- Targeted information campaigns and outreach efforts are needed to raise awareness, dispel misconceptions, and facilitate access to clinical trials.
- A user-friendly platform could play a crucial role in providing accessible information, addressing concerns, and encouraging greater participation in clinical trials.
- To increase participation, it is essential to address concerns about potential risks and side effects, as well as build trust in the clinical trial process.
Patient Insights from Medical Trial Experiences
Clinical trial participation is a unique journey. For some, it’s a way to access life-changing treatments. For others, it’s an opportunity to contribute to important medical advances. Long-term trial participants possess a wealth of knowledge that can benefit prospective patients. Their stories shed light on the practical and emotional aspects of navigating medical trials and help others feel more prepared.
Experienced participants emphasise that understanding the trial protocol upfront reduces anxiety. Patients who know the purpose, expectations, and potential risks can make informed decisions and develop trust with the research team. This clarity is a turning point for many in their decision to continue with long-term studies.
Participants also share that seeing the value of their contributions keeps them motivated. Whether their involvement advances scientific understanding or opens the door to treatment options, knowing they’re part of something meaningful adds purpose to their journey.
Patient insights have revealed four things that helped them stay engaged and manage trial participation. These four things are preparation, organisation, a personal health diary, and a solid support system. Preparation gives patients clarity before beginning a trial. Organisation helps them keep track of various appointments and medications. A personal health diary benefits both patients and trial coordinators because it shows how treatments are working. And lastly, family and friends provide a solid support system for the patient that helps them with emotional and logistical challenges.
Emotional Resilience in Long-Term Trials
The emotional challenges of a long-term trial are under-discussed, and a support network is essential. Having people to talk to—family, friends, or an online patient community—makes a significant difference. One participant described how connecting with others in the same trial made her feel like part of a community and lessened her feelings of isolation.
Participants share that they practice giving themselves grace on tough days. Clinical trials often bring physical and emotional ups and downs. Some days feel challenging to patients, but they remain motivated by remembering the bigger picture—personal health benefits or contributing to medical breakthroughs.
Mindfulness, stress-management, and creativity also play an important role for patients. Some find that meditation or journaling helps process feelings, manage anxiety, and gives a sense of control. Others focus on hobbies, spend time in nature, or engage in creative activities to help them recharge and maintain emotional balance. One participant said painting became their outlet and helped them navigate challenges with renewed focus.
Building Trust with Research Teams
Experienced participants often say good relationships with their trial coordinators gave them a positive experience. Open communication helps patients feel heard and valued. Many participants advise newcomers to establish a good rapport with the research team from the beginning. Questions, honest feedback, and engagement are all part of mutual trust.
Patients report that regular check-ins with coordinators helped them feel supported. These touchpoints allowed them to raise concerns about side effects or logistical issues. One participant recalled how a simple adjustment to their appointment schedule—arranged after a conversation with their coordinator—made their experience significantly smoother.
Long-term participants noted that trials that incorporate patient feedback often create a better experience for everyone. Open dialogue can improve trial processes and build lasting trust between research teams and their participants. Feeling like a valued contributor rather than a passive subject is a recurring theme in medical trial experiences.
Lessons from Long-Term Participants
Adaptability is the one takeaway that resonates across the board. Trials involve unexpected changes in protocols, schedules, or personal health outcomes. Long-term participants encourage others to approach these challenges with flexibility and patience.
Celebrating small victories is another valuable lesson. Some participants acknowledged progress in their condition or celebrated reaching the end of a treatment cycle. These milestones were motivation to continue and reinforced the value of their participation.
Many participants also highlight the importance of staying informed. Keeping up with trial updates, scientific publications, or broader developments in the medical field enhances each patient’s understanding and sense of involvement.
A clinical trial is a journey that blends personal growth with collective progress. Long-term participants bring their perspectives to offer advice and encouragement for others considering or currently navigating these medical trial experiences. Patient insights remind us of the resilience and adaptability required to make a lasting impact.
Keith Berelowitz | Founder & CEO
Keith Berelowitz is the Founder of pRxEngage, a company redefining patient engagement and retention in clinical trials using living experience, proven methods, and AI.
