As a result of COVID-19, discourse around clinical trials has become more prominent in mainstream media than ever. Despite this increased discussion, many clinical studies still struggle to meet enrollment targets.
Research suggests more than three-quarters of the general public are willing to participate in clinical trial studies, yet programmes are still struggling to meet the required number of participants needed to move forward. This leads to delays and blockers in getting potentially life-altering drugs to market.
In our recent mdWebinar, multi-award-winning health advocate and patient engagement champion Trishna Bharadia pointed out: “There is still a lack of general awareness among patient communities about what clinical trial options there are and how to get involved.” So, how can we increase public awareness of clinical studies?
Here, we outline the biggest barriers to awareness of clinical research, the roles healthcare practitioners and clinical trial advocates can play in the education of prospective patients, and the most effective ways of improving clinical trial awareness amongst the general public.
Overcoming Obstacles To Clinical Trial Awareness And Understanding
Health literacy presents one of the biggest barriers in clinical trial awareness. In general, most people just aren’t aware of what clinical trials involve and why they matter. They don’t know anything about the drug development process, or where to find out about it, and often they also don’t realise they can participate in trials.
When patients do participate, it can be difficult for them to understand the information – which tends to be written in industry jargon with complicated concepts they can’t relate to and presented in a way that’s difficult to digest.
Even in the most developed countries with the highest health literacy levels, awareness of clinical trials and the option to participate is low. Where there is mainstream media coverage, it can also be inaccurate and misinformed.
If patients don’t fully understand what their involvement would be, how the study will be conducted, and its wider benefits, it’s unlikely they will apply. If they have a negative impression of what it means to be involved in a clinical study, this becomes even less likely.
When it comes to public communication, studies need to be thoroughly explained in a way that is clear and easy to understand. At the very first touchpoint, a potential patient needs to know that every element of a clinical study will be built around them and their needs. They need to understand what the study is trying to prove, what the risks and potential benefits are, and why their involvement matters. Explaining benefits for future patients creates an emotional and tangible connection, and patients and volunteers will be more willing to take part when they can see how they’re helping future patients with their treatment.
Some key ways we, as an industry, can better educate and raise awareness around clinical trial participation are:
- Using plain language in clinical trial literature that speaks directly to prospective research subjects, addresses their needs, clearly outlines the study’s potential benefits (including the research’s potential impact on future patients), and is transparent about risks and commitments
- Actively sharing information with healthcare practitioners and the media, in an uncomplicated, jargon-free way, ensuring any information shared about specific clinical trials is as clear and accurate as possible
- Leveraging patient and volunteer advocacy, actively encouraging trial participants to share their experiences online via social media, patient forums, or by word of mouth
The Impact Of COVID-19 On Clinical Trial Awareness And Participation
COVID-19 has put product development and clinical trials firmly in the public eye. Today, your average person is talking about development timelines, how trials are being conducted and where, the risks and benefits, and more. We hope, in the long run, this will contribute towards a generally more informed patient community. So, how can we capitalise on this opportunity for further public education around clinical trials?
In short, more communication is needed with potential clinical trial volunteers. Trial recruitment announcements in specialist publications and websites aren’t enough to reach a wider section of the population. Instead, we need to fuel and harness media interest in clinical trials, working with them to communicate about ongoing research and opportunities to participate.
By working alongside mainstream publications to increase awareness of clinical trials, we can help move the development of life-altering drugs forward – not just for COVID, but in all other therapeutic areas too.
The Role of Healthcare Practitioners in Clinical Trial Awareness
While there is a definite need for education in patient and volunteer populations, raising awareness and knowledge of clinical trials amongst Healthcare Practitioners (HCPs) is also an essential part of the picture. Globally, very few patients are informed by their doctors or consultants of clinical research studies which they might be eligible for, simply because many HCPs don’t have this knowledge themselves.
Educating patients about their potential for clinical trial involvement should arguably be an obligation of physicians – and it is part of a wider industry responsibility to give them the talking points, materials, and encouragement to do so. The unique relationship between a doctor and their long-term patients offers an opportunity to educate people within an environment of trust and expertise about why clinical research could be a viable treatment option.
In addition, HCPs – particularly primary care physicians – can provide study organisers with access to suitable patients. Ensuring physicians are equipped with a list of all local or regionally accessible trials and are aware of recruitment requirements is a powerful way to reach further into patient populations.
Raising awareness of clinical trials as a treatment option for patients
The majority of patients aren’t aware of clinical research as an accessible and viable treatment option, due to lack of communication from both HCPs and the general public.
This message is now more important than ever, as healthcare systems are under an immense amount of pressure post-COVID. Over the next few years, participating in a clinical trial could be viewed even more favourably by patients around the world as a way of accessing exceptional healthcare and ongoing monitoring when the usual healthcare routes might be experiencing delays, cancellations, or less regular reviews.
The importance of volunteer advocacy in promoting clinical trials
Unlike patients, who tend to have more access to information about clinical trials through patient advocacy and support groups, healthy volunteers aren’t part of these networks, and therefore don’t have access to opportunities to attend events such conferences or presentations on how a clinical trial works.
Finding the right information online can be complicated, even when you know what you’re looking for. Those actively seeking clinical trial opportunities are a small population who participate regularly, which limits diversity and therefore impacts research integrity.
As an industry, we need to focus on recruiting more diverse, healthy volunteers, not only as trial participants but as advocates. By sharing their experiences, they create transparency around protocols and help increase awareness of active research trials outside of the industry and existing patient and volunteer populations.
Ultimately, this type of advocacy will also attract more patients into the clinical trial world in the future.
Taking A Multi-Pronged Approach To Promoting Clinical Trials
There needs to be a shift in communication and transparency around clinical trials, and we all play a role in that: industry service providers, sponsors, CROs, HCPs, and the patient community. Many patients all over the world have had positive experiences of clinical trials, and while patient advocacy groups are doing great work in educating their members on clinical trials, there is so much more we can do.
Better public education around clinical trials must be the starting point. Every physician has the potential to refer patients to clinical trials, and this could be a route to unlocking access to ground-breaking treatments for a wider patient population.
Creating clear, jargon-free and engaging literature and messages which they can use to educate themselves and their patients helps broaden understanding outside the clinical sphere. There are many willing clinical trial participants out there, and it’s only by increasing public awareness that we stand the best chance of finding and enrolling them.
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