Patient advocacy groups serve a variety of functions: They raise awareness about diseases and issues; they advocate for patients and lobby for healthcare reforms; and they provide a community of support for patients and caregivers. While these roles greatly impact both patients and the pharmaceutical industry as a whole, perhaps their most important role is that of educating their constituents, particularly when it comes to clinical trials.
The voice of reason
In addition to providing reliable information, patient and disease advocacy groups also must counter misinformation and battle misconceptions. One of the most pervasive misconceptions today is that pharmaceutical companies are the “bad guys.” This negative public perception, especially among the diverse populations so sorely needed for clinical trials, stems from negative experiences, whether patients experienced firsthand, discovered through their own research, or heard through the proverbial grapevine.
On the contrary, pharmaceutical companies are key to improving quality of life and longevity, bringing therapies, vaccines, and cures to patients. Thanks to self-policing, regulatory agencies and industry watchdogs, the clinical trial process is the gold standard for ensuring safety and efficacy of treatments and devices brought to market.
The more the patient community is involved, the better the entire clinical process will be. Patients should know that raising their hands to participate in research is not just about joining an interventional trial. They can join an observational study, a patient longitudinal registry, or undergo genetic testing to help move science forward. Making patients aware of the full spectrum of options, such as participating in advisory boards to provide feedback, helps them be comfortable with their choices.
Put yourself in the patient’s shoes
The clinical trial experience begins well before a patient sets foot in a clinic or checks in remotely. Patient advocacy organizations have a responsibility to optimize the patient experience from the get-go.
Imagine that you’re the patient. You’ve just received a devastating diagnosis. You want to explore every option. You want answers, and you want them fast. Your emotions run the gamut: distraught, scared, angry, lonely.
A disease or advocacy group’s website may be one of the first stops for patients or caregivers. They may have initially tried ClinicalTrials.gov, not known for its patient-friendly content or navigation, and become frustrated. The patient is in a distressed state of mind, so don’t complicate things with medical jargon. Provide information in terms that are easy to understand. Just as with plain language summaries (PLS), a sixth-grade reading level is recommended.
Finding a relevant — and geographically accessible — trial is often a daunting task for patients. Make it easy for them by investing in a trial finder. Matching patients to the right trial can be like finding a needle in a haystack. In some patient communities such as rare disease, the process is more manageable as there are so few trials being conducted. In other areas, it is challenge with hundreds, if not thousands, of trials to review and consider. Build goodwill among the patient community by making the search as painless as possible.
Keep the lines of communication open
The clinical trial enrollment process is not a one-way street. It requires two- and three-way communication: between the patient and advocacy organization, between the patient and trial site teams, and between the advocacy organization and the sponsor or trial site teams. Unfortunately, too often patients indicate interest in a clinical study, only to wait weeks for a response (when time may be of the essence), or never hear back.
Why do these patients fall through the cracks? The trial site may no longer be recruiting, its contact details may be outdated, or the site team is understaffed and overworked. As an industry, it is imperative that stakeholders address this drop-off by removing obstacles to patient enrollment. It’s the industry’s duty to be responsive to patients and their inquiries.
Whether it’s providing basic information about clinical trials, helping patients and caregivers find trials, or putting patients in contact with study sites, the industry must provide nothing less than a 5-star experience. Failure to do so will cause patients to give up, speak negatively about the process, and discourage others from participating. Once a patient is enrolled in a study, it’s important to maintain a positive experience. The industry must not only create positive patient experiences; it must encourage participants to pay it forward and share those experiences with friends, family, and other patients.
What the stakeholders in this process must realize is that we’re all in this together. Varying priorities for patients, advocacy groups and pharmaceutical companies — personal health, increasing membership and raising funds, speed to market — offer opportunities for collaboration. Each stakeholder may take a different route, but the ultimate destination is the same: to advance medicine and improve patient outcomes.