“If a company isn’t online it’s missing out on an opportunity to engage with a significant portion of its audience, who are less likely to find this brand,” says Patricia Nettleship, the Director for Social Media and Influence at UCB.
Eighty-two percent of online adults have used social media in the last twelve months, and one in four of them discussed health issues on the Internet looking for or posting information about a medical condition, or searching for treatments and clinical trials.
When patients start their disease journey they want to know how the diagnosis is going to change their life, unfortunately, getting that first step right is often a challenge in itself. For example, when people think of epilepsy, they usually picture grand mal seizures – the kind of seizures that come with a loss of consciousness and violent muscle contractions – and few people are aware of partial seizures, which affect only one part of the brain and generate symptoms specific to the part of the brain that’s affected. For example, a seizure in the occipital lobe results in problems with vision, including hallucinations.
One of the steps required for recognizing this condition correctly is making people aware of it, and teaching them how to recognize symptoms, something pharma are well-equipped to do.
“Are they having conversations with their peers? Where are they having those conversations? Who are the influencers? Understand your audience! What are the issues?”
“Partial onset seizures are not acceptable, so we need to teach patients, carers, and physicians to recognize them, so people can get better outcomes,” Nettleship explained, adding: “The more awareness we build around partial seizures, the more attention our products get, which, inadvertently, leads to better business results.”
But first, pharma companies need to learn to listen to their customers, to recognize their needs, and to respond appropriately.
“I need to understand: are epilepsy patients actively engaging with social platforms? Are they having conversations with their peers? Where are they having those conversations? Who are the influencers? Understand your audience! What are the issues? Where are the pain points, and how can we alleviate those pains?”
But do patients see pharma as a trustworthy source of information?
“Building awareness allows us to build trust early in the patient journey, so they can come to us for [unbranded] information and recognize us as a partner in this process – where we’re not talking about our product – and less as a pharmaceutical company trying to push drugs. This means that there isn’t necessarily a return of investment, initially, but focusing on improving patient outcomes helps us understand what's happening. That's how we build trust.”
When appropriately managed, this strategy can yield excellent benefits by creating a demand for treatment.
“We created a Facebook community called EpilepsyAdvocate. This is a disease-focused group, where we put information, stats, and patient stories about dealing with the disease. For example, epilepsy affects over 3 million Americans of all ages – that’s more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.” Nettleship said.
“Somewhere around 11% of epilepsy patients are in their late 20s, which is something very few people are aware of – I didn’t even know that! That statistic drove an enormous response. People were saying: Wow, I didn’t realize it!”
EpilepsyAdvocate build a community around a disease, allowing patients to inform each other about their seizures, exchanging advice on how to manage them, on what's working and what's not.
Once you have patients talking, you can create expectations that will bring them to your product.
“Okay is not good enough, they really need to push for more”
“We're trying to make patients think that having one seizure a week instead of five is not enough, that they deserve to be seizure free. Okay is not good enough, they really need to push for more, driving conversation toward better outcomes, toward searching for better treatment options.”
Eventually, well-informed patients who demand better outcomes to be delivered more quickly might have the power to change the way the healthcare system provides access to treatment.
“Right now in the US, a patient has to go through a certain process to get to what might be the best treatment for them. Chances are, as a physician, I know best what's going to work best for this patient, and it's not always the first recommended treatment. How do we move on to starting with what's best for the patient?”
A shift in access to therapies would prevent situations in which by the time patients get to the right treatments, their disease has progressed so further than when it was and where it could have been if he got the right treatment immediately, which would decrease the rates of comorbidities, diminishing overall healthcare costs and improving patient outcomes.
Simple as it sounds, getting the information out there and managing the online environment is challenging for people coming from highly specialized environments.
“We work in a corporate setting, and when we go outside, we tend to talk in corporate speak,” Nettleship added, introducing the concept of internal ambassadors, a UCB program designed to teach experts to communicate with the outsiders in a human.
“This is where we're going, not where we are yet”
“We have some of the smartest people I ever had the privilege to work with at UCB, so…we're going teach them how to be human in an online space.”
Eventually, these experts will be blogging, having scientific conversations with other researchers, but also communicating directly with patients eager to hear from the researchers.
“This is where we're going, not where we are yet,” Nettleship added, stressing the need for pharma to make their expertise available and accessible to people who want to learn more.
But not everything is fair game, and any online activity conducted by pharma needs to follow a complex set of regulations.
“We can't have many conversations in a branded environment – we can't talk about building awareness for a disease within a branded environment – we can't talk about the drug,” Nettleship explained.
Even the unbranded conversation requires filtering systems that ensure that discussions on the company’s property feature no treatment or off-label recommendations, and while no immediate increase in sales should be expected, raising awareness within disease states creates demand for drugs, which translates into better results for pharma down the line.
Do it right
The Internet has taken over the way we consume information, and the social media has redefined the way we interact within online environments. Nevertheless, Internet and social media remain tools that can be helpful in achieving certain goals, but online presence is not a goal in itself.
“How does social media help improve patient outcomes? Once you know, then you can create strategies for social”
“The question is: How does social media help improve patient outcomes? Once you know, then you can create strategies for social,” Nettleship cautioned.
“It's about understanding how your business goals can be enabled by social. If your goal is to improve patient outcomes, then you have to think about how to get the most influential people to talk about it. People like to be validated by people whom we trust either another patient or a healthcare provider, so bringing those influences in and using that to improve patient outcomes is where you start to leverage the system and get an exponential value. You can't start with social. It's just the enabler.”
Patricia Nettleship will be sharing her "Adventures in Patient Cantered Marketing" at eyeforpharma Philidelphia on June 3rd. For more information or to find out who else will be speaking visit the official website.
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