Since 2018, Medable has employed a network of patients and caregivers whose job is to help improve the clinical trial experience for participants, sites, and coordinators. Their work is designed to help facilitate equitable, inclusive, and diverse clinical trials. They are called the Patient Caregiver Network (PCN).
Medable’s PCN is comprised of over 80+ members representing various indications who have each participated in, or assisted with clinical conduct.
With the landscape of pharma shifting, Medable recently surveyed its network to identify what’s working, and what isn’t, in the world of digital evidence generation. We’ve collected their responses and are summarizing their sentiments below in order to help further clinical research and to help bring effective therapies to patients faster.
Question: What are the largest barriers you’ve faced when looking to participate in clinical research?
The biggest barriers faced by participants in clinical research are multi-faceted, as indicated by survey responses. Location emerges as the most significant challenge, with potential participants often deterred by the burden of traveling to research centers that might be far from their residences.
Moreover, the costs associated with participating in clinical trials are a major concern, as participants may encounter expenses related to transportation, accommodation, or medical tests.
Furthermore, many individuals remain unaware of available trial options due to limited education or information dissemination, hindering their ability to consider research participation as an option.
Lastly, co-morbidities can present barriers, as certain clinical trials might exclude participants with pre-existing health conditions, leading to exclusionary challenges for potential candidates. Addressing these barriers and promoting inclusivity in clinical research is essential to ensure diverse and representative study populations and enhance the overall validity and impact of research findings.
Question: How would you prefer the information you receive from your healthcare team to be given to you?
According to the survey responses, participants have diverse preferences regarding how they would like to receive trial information.
A small percentage favored the traditional approach of receiving written information, printed and sent via mail as a paper copy. A similar percentage also expressed interest in receiving trial details through a text message on their phone, with the added convenience of a link for further information if needed.
A significant portion preferred digitized communication and receiving trial information via email. This mode allows for easy access and as an ongoing reference to important details. Additionally, a notable number of participants indicated their preference for obtaining trial information in person, delivered directly from a healthcare provider in their office to allow for a one-on-one conversation.
Lastly, a smaller proportion preferred accessing trial information through a patient portal, providing them with individual login credentials to ensure secure access and data confidentiality.
Understanding these varied preferences is crucial for effectively disseminating trial information and enhancing participant engagement in clinical research endeavors.
Question: What do you see as the most beneficial technological advances in healthcare from your own perspective, as well as those in your indication community you represent?
Based on the survey responses, respondents have clear preferences regarding the technology they find most beneficial.
The majority of participants highly favored telehealth live visits and follow-ups available through platforms like Zoom or Google Meets. This indicates the growing popularity and convenience of virtual healthcare consultations.
A small percentage expressed interest in electronic information available via the web, which likely includes accessing online resources and websites for healthcare-related information.
Additionally, a substantial proportion found apps designed for their personal healthcare journey and to house specific information and test results to be highly beneficial, suggesting the value of health-related applications for individuals.
Notably, no respondents preferred chat boxes with preapproved resources hosted by a bot or a live person. This finding may indicate a lack of interest in automated or instant messaging solutions for healthcare-related queries.
Question: If you were to begin your clinical trial participation with the knowledge you have now, what advice would you offer yourself or a loved one?
- Ask questions and seek clarification about all aspects of the trial, including activities, side effects, updates, and study details.
- Take notes and keep good records to help track progress and communicate effectively.
- Be confident in expressing concerns and areas where improvements may be needed.
- Understand the doctor's role in providing information and making participants feel comfortable.
- Recognize the option to decline participation or withdraw if it feels burdensome or not right.
- Ensure a clear understanding of data privacy and confidentiality rights.
- Request explanations and a top 10 list of key things to know to set expectations.
- Advocate for oneself and others, both during the trial and in terms of broader issues like discrimination or inequalities.
- Speak up about scheduling, procedures, protocols, and any concerns about ease or efficiency.
- Communicate needs and work with the study team to find creative solutions.
- Keep track of lab results and stay informed about personal health information.
- Consider how therapy or changes in function may impact study procedures.