Patients Teaching Patients About Clinical Trials
(Editor’s Note: Amy Ohm is a melanoma patient, PEN Collaborative Partner, and the Founder of Treatment Diaries, an online platform that invites patients to anonymously share information about their journey. She is also a member of the CureClick Ambassador program that shares information about clinical trials via social media.)
Treatment Diaries was founded so that patients could anonymously share information about their cancer journey. This sharing of information is so helpful to others going through similar circumstances. The CureClick Ambassador program also shares information with patients. I joined this program so that I could reach out to others via social media and share information about clinical trials.
I am passionate about patients and the CureClick Ambassador program gives me a way to leverage the Treatment Diaries voice to direct them to resources and treatment options during a time of need. Having been the patient in years past I know firsthand how overwhelming a diagnosis is. Understanding your options and feeling confident takes a lot of research. CureClick gives me the options and the voice to share clinical trials with those who need them most.
CureClick is an initiative developed in partnership with WEGO Health designed to help accelerate medical advances by empowering Health Activists (i.e., consumer health advocates) with tools and resources to spread the word about important clinical trials that are looking for volunteers. As one of many Ambassadors focused on health, we are able to spread the word quickly when it comes to trials and to communities that are actively looking for options.
It is well known that many clinical trials suffer from low enrollment. It can be difficult for patients to qualify depending on condition, stage and geographical proximity to trial. Any one or combination of these parameters can eliminate a trial from consideration. Patients struggle with knowing what is available and in trusting the source. CureClick Ambassadors are trusted and known to patients which helps us alert them in a timely fashion of the options best aligned with their personal situation.
Industry and government need to do more in the way of increasing patient awareness and participation. They need a way to participate in patient discussions without negatively impacting the intrinsic trust associated with existing patient centered platforms. By providing educational insight and details around clinical trials and allowing the patients to opt in to the information, the marketplace will see a higher degree of adoption in pursuing these options. Patients are hungry for options and increasingly eager to connect with other patients who can relate and share experiences. Industry and government can further complement this interaction with options for them to explore.
Patient advocacy groups can help tremendously. They are one of the most trusted resources for those navigating the need for clinical trials next to their physician and care teams. Patients want to align with those who have been down the road of battling a disease and understanding their personal experience with a clinical trial.
The clinical trial process has seen some definite progress over the past few years. There seem to be more and more options around platforms attempting to find the right mix of social, advocacy and adherence to industry guidelines. These challenges impact a company’s ability to serve the patient while maintaining revenues to cover expenses and grow. Where you have platforms that have built a strong patient contingency there will be a great opportunity for the sharing of clinical trial options and adoption. CureClick is making great strides by embracing and empowering Ambassadors to assist in spreading the message. I am honored to participate in this mission and would like to see them succeed while helping as many patients as possible.