Everyone knows the term “Human Guinea Pig.” It’s not a pleasant phrase, but it’s one that is often directed at the clinical trial industry, conjuring up images of coldhearted researchers experimenting on victim-like patients. Of course, the reality of clinical trials couldn’t be further from this notion.
Clinical trial participants aren’t blindly participating nor being taken advantage of. They’re doing a public service and helping researchers to make huge strides forward in regards to modern medicine and disease prevention, diagnosis and treatment.
However, there’s no denying that clinical research does have a bit of a stigma and negative connotation in the public eye. Focus groups held by the National Institutes of Health determined that many people (including caregivers) lack familiarity with clinical trials and are unaware of opportunities for participation by healthy volunteers. Most focus group participants also expressed generally negative attitudes about clinical trial participation; their views changed significantly, however, after learning more about the positive effects of clinical studies.
It takes a lot of practice and many failures to finally become skilled at converting potential participants into volunteers. If you’re struggling to communicate the benefits of participating with your target population you can request Due Diligence for your study—a process that determines how many participants we can guarantee.
The insights above indicate that there is a huge shortage of information regarding clinical trials being supplied to the public, creating a cycle of misunderstanding and fear. Researchers need to start building awareness of the social good that clinical research achieves, starting at the local level. Being involved in the community and sharing the positives of clinical research will help improve the perception of trials.
Here are some ways for clinical researchers to start changing prevalent negative opinions within their communities:
Build awareness within the general public.
Clinical research is the sole way to determine the effectiveness and safety of medications and other treatments, making it the key to enhancing health and reducing the suffering of those with illnesses and disabilities. Lab testing and animal testing can only tell us so much about how medications will affect the human body. Groundbreaking medical advances – both in the present and the past – were only possible due to the participation and dedication of clinical research volunteers.
Many potential patients may be intrigued by the idea of participating in clinical trials and working towards this social good, but may also hold back due to lack of information and understanding, lack of resources, or outright fear. It’s in researchers’ hands to supply this information and encourage consideration of participation in an ethical and educational manner. But how?
Host a “questions and answers” event at a local hospital, treatment center, or community center.
Invite the general public to attend a Q&A event, applying an open-door policy where interested parties can come and go as they please without commitment. Spend an afternoon or evening answering questions about why clinical trials are important and valuable, as well as addressing common concerns of potential volunteers. These concerns might include cost and insurance information, methods for handling logistics (including patient time constraints, potential childcare needs, and alternate transportation options), and how participation may affect volunteers’ day-to-day lives and wellbeing. Plan to cover a list of common questions, but leave plenty of time for the audience to ask questions as well.
Offer tours of your facilities.
Hospitals, laboratories, and other medical facilities have an unfortunate reputation for being sterile and impersonal. Many clinical study candidates may feel uncomfortable with the thought of spending substantial time in these types of environments. Ease their fears by hosting free tours of your research facilities for interested volunteers, allowing them to become comfortable with your location, as well as the people who work there. This is also a good time to answer some one-on-one questions and address any private concerns.
Attend community events.
When possible, reach to outside parties and institutions and ask if you can attend their events to provide information about your clinical research. Churches, senior centers, and community centers may be most open to allowing you to speak or pass out information; but get creative and tailor your approach to your local community. If an organisation with a seemingly large number of potential participants is hosting an event, it’s worth asking if you can contribute or get involved in some way.
Set up local advertisements.
Plan and utilise a marketing budget for raising awareness of your clinical research and the social good you hope to achieve. All advertisements should be clear and easy to understand without being overly technical or cold. They should also contain information that is specifically relevant to potential participants instead of being completely generic. Look to local newspapers, community centers, healthcare clinics, newsletters, and other sources for displaying your advertisements to the public. By creating clear trial advertisements, you educate your potential study participants. You may then find you have more interested candidates, which can lead to developing a patient database for future trials.
Build a local database of interested patients.
As you make connections and build relationships with possible participants, start storing their information in a database that contains specifics about all interested volunteers in your community. Make notes of key details such as age, gender, medical history, contact information, and any medical data relevant to your clinical trial. Even if interested patients don’t qualify for your current research, you’ll have their information on file to reach out to them should they qualify for a future study. You’ll have a database of possible participants on hand at all times, which could be hugely influential when it comes to starting future trials on time and with an adequate supply of volunteers.
Building awareness at the doctor and healthcare worker level.
Unfortunately, many doctors don’t have particularly positive views of clinical research, yet they remain key “gatekeepers” when it comes to recruiting patients for trials. According to the National Institutes of Health, 77% of patients who participate in clinical trials learn about the trial from their healthcare provider. Doctors and other healthcare professionals often have close and confidential relationships with their patients, meaning it’s extremely important for clinical researchers to start building good working relationships with doctors as well.
Reach out to and educate ALL medical professionals about the value of clinical trials.
Some primary care doctors may feel that it is the responsibility of specialists to talk to patients about clinical trials, not their responsibility. However, all medical professionals who interact with patients have the potential to influence and refer interested participants. Reach out to local doctors, general practitioners, specialists, and allied health professionals and start building relationships with them. A solid relationship will allow trust to blossom and grow, which is an essential step when it comes to them referring patients to your studies. Educate them about the value and importance of clinical trials in general, as well as your research goals specifically.
Host information sessions for medical professionals.
Luncheons, Q&A evenings, and other casual events are prime opportunities for educating medical professionals about clinical studies. Consider hosting your own information session and inviting healthcare professionals from your local community to attend and learn about your clinical trial, your research goals, and the types of patients you’re looking for. Encourage an open dialogue and hand out informational materials such as flyers, brochures, and booklets. Many doctors who refer patients for clinical trials learned about the research via their colleagues, so these types of events have the potential to be very far-reaching.
Speak at meetings and events for healthcare professionals.
In addition to hosting your own informational events, ask if you can speak briefly about clinical trials at seminars or other learning events for medical and healthcare professionals. Universities, hospitals, and other healthcare organisations frequently host educational and professional conferences, meetings, and other get-togethers for doctors and other professionals in the industry. These events are a wonderful opportunity for you to introduce your clinical research to a large group of experts in the community who may become referral sources for you in the future.
Build awareness through online patient communities.
With the expansion of technology and online resources in the 21st century, more and more patients are turning to the internet to seek out information and support for their illnesses and other medical conditions. Online patient communities for various conditions are popping up all over the web, including forums used by patients to discuss their illnesses, symptoms, treatment options, and support methods. Studies have shown that member demographics for online patient communities are representative of patients in general, creating a possible opportunity for clinical trial recruiters and researchers.
If the rules allow it, research sites could participate in these forums to provide information regarding clinical studies. This could be an excellent way to reach your key patient demographic. However, there are definite limitations here. One drawback is that patients in these forums may be located all over the world, making it difficult to pinpoint patients in your local region.
Furthermore, forum rules or even local laws may dictate whether or not research institutions can participate in these forums, so be sure to check specific regulations for each and every forum before posting about clinical trials. Keep in mind all necessary ethical considerations regarding patient contact and recruitment.
Building awareness of the social benefit of clinical research has many positive impacts, both for your individual trial, as well as for the clinical trial industry as a whole. Above all, the key reason for nonparticipation and fear of clinical research is a lack of understanding, information, and awareness from both the public and the medical community.
Luckily, clinical researchers have the ability to reshape these ideas and shine a more positive and factual light on clinical studies. By creating awareness, researchers can ensure not only the success of their trials, but the advancement of medical and healthcare technologies and resources for years to come. Planning and executing these activities will also help build databases of relevant local patients that may participate in future trials and foster relationships with more doctors that can refer candidates.
Need help strategising ways to build awareness in your specific community? Want to chat more about communicating and building relationships with patients and healthcare professionals? Contact Trialfacts today for assistance and guidance tailored to your clinical research.