The Value of Patient Advisory Boards in Understanding Receptivity to New Technologies in Healthcare and Clinical Research

Written by Rebecca Nordland

The COVID-19 pandemic has forever changed nearly all aspects of the way we live and work. Healthcare, and by association, clinical research, has been among the sectors most affected by significant changes to their standard practices and procedures.  

Given the need for reduced in-person interaction between healthcare providers and patients and the resulting shift to virtual engagement, the use of patient technology and telemedicine has significantly increased during the pandemic.  

But how do patients feel about this change to a more remote healthcare model—particularly when it is part of a clinical trial? Is the added technology beneficial to patients, or is it creating more burdens for them? Are patients satisfied with the remote care they are receiving, and do they consider it to be “as good” as their previous in-person care? 

Patient Advisory Boards (PABs) provide the perfect opportunity to gain rich insights on these very topics. The valuable feedback from PABs can be used to inform protocol designs and patient engagement strategies, ultimately improving the overall experiences of trial participants.  

CISCRP has conducted several PABs over the past year. We have found that a number of common themes have arisen regarding perceptions of remote patient technology and telemedicine in clinical trials:  

  • Instructions and Training on Technology Use: Providing patients with clear instructions and training on the use of any technology or device is critical to ensuring a positive experience. Instructions should be provided in multiple formats (e.g., text instructions, video instructions) and be made readily available to patients (e.g., on a computer or mobile device, as a hard copy, etc.). People also prefer to have some indicator from the technology or device that they are using it correctly. This helps them feel confident that they are taking the appropriate steps in self-management of their care. 
  • Convenience and Quality: Many people appreciate the convenience of telemedicine and remote assessments that can be done from the comfort of their home.  However, many still prefer to have a choice between virtual or in-person appointments, as some perceive virtual appointments to be less thorough and not an accurate way to get a diagnosis. This is particularly true for conditions that present with more visual or tactile symptoms (e.g., dermatological conditions). 
  • Accessibility Factors: It is important to be aware that geographical and socioeconomic factors may affect ability to use telemedicine or patient technology. Many patient-facing technologies require a stable internet connection, creating access issues for those who live in rural locations or are unable to afford internet service. Shipping of devices could also be challenging for those living in rural areas. 
  • Privacy Concerns: When it comes to using technology as part of medical care, people have major concerns about data security and privacy. Additionally, some may not have a private location in their home for attending telemedicine appointments. It is important for researchers to be transparent and to clearly communicate the data protection measures that are in place. Patients should be aware of how and with whom their health information is being shared. 

Given the changes to the clinical trial landscape and the pace of technological advancements that we have seen over the past year, soliciting patient feedback has never been more important. Patient Advisory Boards offer a practical way for industry to keep a pulse on patient needs and preferences. 

Click here to learn how a CISCRP Patient Advisory Board can help your organization gather important patient insights.  

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