Clinical trials can further medical science and give patients vital treatment to improve their lives. Yet the general public’s awareness of clinical trials remains low. One way to improve awareness of clinical trials is for pharma to align with patient advocacy groups and other disease awareness campaigners to spread messaging to patients.
Here we look at what makes disease awareness campaigns succeed and what pharma can do to benefit from these periods of heightened awareness.
As many as 80 percent of Americans know what clinical trials are, but 74 percent say a lack of information and awareness has prevented them from participating in research. Indeed, only 18 percent have participated in or know someone who has participated in a clinical trial, writes Sarah Mahoney at MM&M, citing research from Research!America.org, a nonprofit advocacy group.
“As an industry, we do a terrible job telling our story,” Paul Ivsin, managing director of clinical trial strategy and patient recruitment at the Patient Experience Project, tells Mahoney. “You’ve got fantastic people conducting trials, with serious dedication. Standards of proof are so high that 90% of these compounds fail. Yet we never tell people about that.”
Low awareness contributes to pharma’s clinical trial recruitment problem. It is particularly bad among cancer patients, says Ellen Miller-Sonet, chief strategy and alliance officer for the non-profit group CancerCare. Only 18 percent of patients receiving treatment in academic medical centers say they’ve been given enough information about trials and that drops to 12 percent for those receiving care in community cancer centers.
Pinktober for breast cancer awareness and Movember for prostate cancer awareness are well known global campaigns. But how effective are they in encouraging people to seek treatment? One uses pink ribbons in its messaging and the other encourages men to share selfies to social media showcasing their mustaches. Both are visually striking, says Giovanni Cacciamani, MD, assistant professor of research urology at the Keck School of Medicine of the University of Southern California and principal investigator of the study.
When compared, Pinktober showed far more online searches of keywords such as Pinktober, breast cancer and mammography. Prostate cancer searches did not seem to rise during Movember. One conclusion drawn is that women are more likely to research their health online, and while Movember has resonated with younger men active on social media, it hasn’t with those old enough to be at most risk of prostate cancer.
Awareness campaigns might develop a lot of social media traction but it doesn’t mean the right patient population is seeing the message.
Breast cancer awareness campaign, Grab Life by the Boobs, encouraged young people to check their breasts. The usual target audience of breast cancer awareness tends to be over-50s, but younger people are at risk too, says Lizzy Hillier at Econsultancy. It was effective because the messaging was authentic, uplifting and optimistic. Young people who have actually experienced breast cancer or have been affected by it shared their personal stories via videos.
Back in 2014, the ALS Ice Bucket Challenge was also a huge success, Sarah Pike at Carevoyance, says. ALS (amyotrophic lateral sclerosis) is also known as motor neurone disease. People dumped buckets of icy water over themselves to show their support for those living with ALS. It was an unusual spectacle and encouraged sharing on social media. The result was more than $115 million raised in the U.S. alone, even attracting participation from Bill Gates and George W. Bush.
Awareness strategies need to engage patients. Successful engagement happens when pharma can show that it understands patients’ needs, writes Emma Sutcliffe, head of patient engagement at NexGen Healthcare Communications. Pharma can do this by providing the “ABCs” — awareness of patients’ needs, support to change behaviors and continued care and support.
Awareness campaigns should focus on four key factors, according to Ann Christiano and Annie Neimand, Ph.D., at Stanford Social Innovation Review:
These steps will help to improve patient engagement. When awareness campaigns engage properly with patients, they can improve early diagnosis, Mary McGowan, executive director at The Myositis Association, tells journalist Gail Dutton. Through awareness campaigns, people increase their chance of understanding that their symptoms could be caused by a disease or medical condition. When this happens, patients are more likely to talk to their physicians.
McGowan says that during myositis awareness month, the association focused on both physicians and the highest at-risk population, women of color. She explains why this focus is so important: “Patients need to know their symptoms—rashes, fatigue, trouble rising from chairs, falling, or the inability to open jars, for example—aren’t just signs of aging. When made aware of the symptoms and the fact that they can be part of a serious disease, people are more likely to discuss them with their doctors.”
There are opportunities for pharma to align with disease awareness associations and patient advocacy groups. Most of pharma’s contributions tend to be through financial support, Dutton explains. In the case of The Myositis Association, however, its biopharma partners also used their own communication channels to share the messaging.
Pharma could also help provide educational materials as well as information on upcoming trials or the status of research into a particular condition. Dutton says the benefits are obvious and mutual: Pharma increases its patient pool for better recruitment and patients benefit from finding out more about the disease. This is even more important for rare diseases such as myositis.
Pharma and healthcare solutions architect Amanda Harris says awareness campaigns are positive because they encourage dialogue between patients and doctors. Even when pharma sponsors campaigns or funds them, these campaigns do not promote specific products or treatments. But pharma companies are still taking potentially expensive risks backing these campaigns. They can raise awareness and encourage patients to seek treatment, but this won’t necessarily result in pharma companies directly benefiting.
She says pharma companies that choose to invest in campaigns should be applauded because direct benefits are not guaranteed.
A good example of generating awareness and pharma using this successfully is with multiple sclerosis awareness, says medical writer Brian P. Dunleavy. The National Multiple Sclerosis Society shares personal stories of patients living with MS, which is an effective means of engagement. Its website also provides an MS clinical trial database to encourage action from people with MS.
Patient advocacy groups are important allies for pharma companies. The former can unite without there being any direct or implied endorsement, writes George Underwood, features editor at Pharmaphorum. The assumption is that the partnership is founded on a mutually beneficial premis: Pharma finds patients and designs better trials with their feedback; patients receive better treatment.
Underwood points to successful pharma and patient advocacy group collaborations. For example, Allergan partnered with the American Migraine Foundation to create an interactive awareness campaign called “Frames of Mind” that asked patients to submit their own artwork to depict how their migraines impacted them. The feedback was highly valuable to pharma to help find out more about the lived and nuanced experiences of patients.
Keena Patel, a managing director in Accenture’s Life Sciences, tells Underwood that pharma and patient advocacy groups are seeing the value in collaboration, with both gaining from the approach.
Still, pharma companies that choose to partner with PAGs and disease awareness campaigners should remember that they will not necessarily reap direct rewards. Pharma may fund campaigns but not be able to plug a product or specific trial.
Nevertheless, pharma’s involvement does help to increase patients’ awareness of their conditions, which can encourage them to talk to their doctors. Pharma companies can ensure that awareness campaigns engage patients and their physicians — and that the latter are aware of current trials under way.
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