Experts feel that the main setback; to the End to End Patient Engagement programs in Clinical Research is the problems of awareness, understanding, and trust among trial participants and the providers. Together with this, is the disconnect between the interest shown by the patient to participate and whether he actually enrolls for the program. Other hurdles include collecting a particular group of patients for a particular type of study and the fact that about 10 % of those that do enroll are lost to follow-up. “In order to solve this problem the specialty service provider ‘Bioclinica’ has suggested that two separate divisions be created by the company under its ‘Global Clinical Research business segments’ The president and CEO of ‘Bioclinical’ John Hubbard feels that together both the divisions will succeed in creating an integrated offering which will convince patients to enroll in this end to end patient engagement in clinical research.
The complexity of protocol inclusion, exclusion and regulatory constraints are other factors which add to the difficulties in enrollment of patients. Add to this, a general ignorance about the program of Clinical trials at the provider and healthcare system level and the difficulties get a ladder to climb even more. But companies like Pfizer Bristol-Myers Squibb have tried to make people aware of this end to end engagement program and its benefits, by thanking both participants and providers for their involvement in the programs.
Social media too plays a role in popularizing this program by holding chat shows, using websites, arranging chat room conversations, and maintaining electronic medical records to help identify appropriate subjects.
When we find the inclinations of the clinical researchers growing and the need for specific patients increasing then it becomes important that we make recruitment, of patients more lucrative, thus making availability easier. A very important aspect that needs looking into is changing the perception that participating in a clinical research or clinical trial is becoming a guinea pig or becoming a part of an experiment.
Thus, taking note of the words of Jennifer Byrne Chief Executive Officer- PMG Research, Inc., it would be easier to recruit as well as retain volunteer patients if we tell them that by enrolling for these programmes they are helping medical science not only in advancement and improvement but they are also helping science for the greater good and advancement of humanity, they are becoming a part of a revolution which will help in medical expertise. And together with this it will be still better if they are told that on the completion of these studies they will come out better equipped with knowledge concerning these diseases, their remedies, by volunteering for these programmes because during the research they will come in contact with the best and knowledgeable professionals of the concerned field, who will impart and share their knowledge with them. As a result, they would become better and well-informed consumers as well as more knowledgeable experts in the general well being of their own loved one’s health.
With time, we are getting to see some positive results and improvement of End to End Engagement aspect of clinical research and trial. A number of organizations are taking serious note of this aspect and trying to understand the problems, hesitations of participation and enrolment in these programs. They are trying to fasten the reasons at ground level; they are taking into consideration what the participant feels instead of just discussing the topic among experts across the table. So, it is no more across the table as it is on the field, inside the home of the participants among their family and friends in the process they are trying to convince them of the fruitfulness of the program and taking away misguided thoughts from them. This is a very positive step and will bring positive results too.