Fly On The Wall
Social listening can help pharma understand their customers from a whole new perspective
Social media can no longer be deemed “new”, but the pharma sector is still elucidating how they can use these networks to benefit their businesses. Social listening, or monitoring the web and social media for mentions of your organisation, its competitors, and its areas of interest, has become an essential exercise in recent years for pharmaceutical companies wishing to know what their target market really think, about their disease, their medication, and their brand.
According to Carina Mikolajczak of QuintilesIMS, social listening is “fascinating”. She explains to eyeforpharma that social media data represents a 
relatively new data source being utilized for market research within the pharma industry.
“It allows companies – within the rules of data privacy regulations – to leverage the information that people are voluntarily sharing on social media by aggregating the information and making sense of this enormous data pool. Analysing social media data is not about focusing on individual statements but about finding overlaying patterns within the information. Based on the analysed data, social listening provides real-world insights to support the identification of actions to take forward and the decision making process.”
What is different about the results of social listening exercises compared to traditional market research endeavours, is that the information gleaned is available in real-time, and is unprompted. Patients writing on blogs, chat forums, and patient pages, do so freely and without inhibition.
“They do so because they feel they want to share their experiences, and not because somebody asked,” explains Mikolajczak; this is in direct contrast to patient focus groups, which she says will always carry an inherent bias.
According to Mikolajczak, this presents a novel opportunity for pharma to listen to the patient in a very different way.
“The anonymity of the internet boosts patients’ willingness to share their true feelings without inhibitions. This could be anything from their emotions, to how their medication makes them feel. There are myriad opportunities to use the information gleaned from social listening,” she says. These unfiltered insights can allow for specific tailoring of patient support programs, for example.
“One of the things companies use it for is to design patient support programs or activities because it helps them understand what patients care about and what’s really difficult for them. It gives them ideas and directions on how to support patients, based on the problems patients are discussing online. It also helps with HCP communication by understanding what patients are talking about – these will be the questions they take to their physicians, so companies can better support HCPs too, by addressing the challenges the HCPs face and any additional support they need.”
Another conundrum that can be addressed by social listening is that of poor patient adherence. “Is it because they simply forget, because they can’t get an appointment for the next prescription, is it because they fear side effects? There are many reasons why a patient may not be adherent and by digging into social media conversations you can understand what is preventing your patients from taking their medications when they are supposed to. If you know your patients are just forgetting for example, a reminder service could help them, but if you know they fear side effects then other measures will be relevant such as letting patients know more about how your drug acts in their body,” Mikolajczak explains.
Mikolajczak highlights that the application area of social media listening is highly versatile and refers to the example of a pharma social listening project, which is seeking to assess the level of effect that specified marketing and PR measures (e.g. the publication of clinical trial results) generate in social media and how these measures change company/ brand perception in the online world over time.
Perspective
Ciara Kennedy is President and CEO of Amplyx Pharmaceuticals, and was previously chief operating officer at Lumena Pharmaceuticals. Kennedy admits that social media can be “precarious territory”, adding that it is something of a double-edged sword for pharmaceutical companies wishing to
gain insight into its current and potential customers.
She stresses, however, that this can depend on your particular perspective; “It is such an accessible platform but can also be unruly in terms of commentary and managing content, so there is a clash there. The value of social media is highest when it comes to interacting with patients.”
Kennedy says that social media can complement traditional market research, particularly when it comes to rare diseases, the domain Lumena was in.
“For all sorts of patient interaction, social media is taking over a significant portion of the interface but it is particularly powerful within rare disease. In rare diseases, where you have just a couple of hundred people, or less, in one country with a disease, trying to get all of those people together is logistically impossible.
“When you are researching a new disease area or therapy, it is so important to hear directly from patients about their condition and how their life is affected by that condition. While talking to healthcare professionals is important, these conversations generally focus on 1 or 2 aspects of the disease or a snapshot in time. That’s where social media can be a wonderful tool, you can almost be a fly on the wall in these online patient groups. You can see which topics are being brought up again and again.”
She adds that there are drawbacks: “There is a lot of noise and a lot of variability – you have to listen to many patients to generalise this type of information but it can be really insightful to do so.”
Indeed, social listening proved vital for understanding the experiences of patients with one of the rare liver diseases treated by compounds eventually developed by Lumena. Kennedy explains that one of the worst symptoms experienced by patients was severe itching – this topic dominated online patient forums.
“Parents of children with the condition were saying that they knew how tough a night it had been by the amount of blood on the sheets. This type of raw, unadulterated unfiltered view into the patient experience is invaluable from an understanding perspective. Sometimes people are reaching out for help, or sometimes they just want to vent. You want to learn about their symptoms, their coping mechanisms, what’s working and what’s not working.
“We didn’t rely entirely on social media, but through that channel we were able to gather a few families together who we then visited to gather information. So it was a kind of hybrid model when it came to gathering the data we needed.”
As the saying goes, “social media is a telephone, not a megaphone”. In addition to these listening exercises, Lumena also used social channels to communicate directly with patients, announcing new trials, upcoming events, or product information.
Much of this was carried out in conjunction with patient advocacy groups, and Kennedy believes that this sector have now realised the power of social media and how it can broaden their reach from their previously locally connected members.
“Things like forming Facebook groups have made it very easy, as it such an accessible platform for people to connect. Lots of people have tried other ways of connecting such as chat groups etc., but the fact that Facebook is so mainstream and so many people are already on it there is a seamless integration there and that’s why it has become so much more powerful.”
Support
Birgit Bauer, Social Media Expert, Journalist and Speaker,is one such patient advocate. Having been diagnosed with MS in 2005, she now works tirelessly in advocacy, blogging about her condition and providing consultancy services to pharma. 
Bauer agrees that the sector has finally realised what a goldmine social media can be when it comes to learning about their patients. “They want to communicate with patients but there are hurdles from the legal and compliance perspectives, and also internal barriers that complicate things. This meant that for years, pharma created solutions for patients, without any patient involvement. We are seeing this at the moment, that pharma companies are trying to be more engaged,” she says, although she admits this can be hit and miss. For example, companies can be highly engaged when a product is launched, but as time goes on, this engagement isn’t sustained, even though patient may need as much support as before.
Bauer is herself heavily involved in social listening. She uses these insights to help pharmaceutical companies develop patient support programs, including appropriate education and information resources.
“The patient’s problem is that they find a huge raft of information online, and they often cannot differentiate between good information and bad information. Obviously, regulations mean companies can’t give all the information relating to a drug or therapy, but I think they should sometimes give more practical information – sometimes they are too theoretical. Patients often need information that is more useful, that they can integrate into their daily life. For example, how to transport medication, or how to incorporate exercise into their everyday life. This can be learned by listening to patients on social media,” she says.
She sees an extremely important role for social media when it comes to pharma engagement with patients. “It is critical. Patients may have been on social media for years – it may have been their only outlet. Their time in the doctor’s office is limited, and they may not get to ask all their questions so they need to find another source of information. Therefore they use Facebook, they use Twitter. Companies can be a credible source and can build up trust in giving the right information online.”
She believes social listening can transform the relationship between pharma and patients. “I want to see better communication between the different stakeholders in disease. We have to find a common language.”
Popularity
The question is whether social listening will usurp traditional market research. According to Mikolajczak, social listening will become even more established, and will be considered a standard data source in the short-to-medium term; “the next two-to-three years”. Right now, it is still not as established as traditional methods, but is steadily increasing in popularity.
“It will not take over but it will continue in parallel, the benefits are enormous.” These include amongst others, cost benefits and higher convenience. “As a market research method it is faster as you don’t have to recruit, schedule and interview – with social media listening you can just start right away”. Furthermore, social listening is able to utilize a much larger data pool – for example easily more than a thousand patient statements for a specific question – compared to traditional market research methods, which are usually restricted to smaller sample pools.
And although they exist in parallel, Mikolajczak is keen to stress that the two research modalities actually enrich each other. “It is very explorative – you can get a very acute sense of patients’ unmet needs and can form a hypothesis for future research and identify where you should dig deeper.”
There are also limitations when it comes to leveraging social media as a market research tool. “Representativeness of the analysed data pool from social media with the basic patient population cannot be guaranteed. This is due to the fact, that the selection of information based on demographic or other criteria is usually not possible in social media” she says.
So how does all this insight change what companies are already doing?
According to Kennedy there are multiple possibilities, especially when it comes to clinical trial design. “It can inform clinical trial design by influencing the endpoint you think it’s important to study. In addition, you can learn a lot about what other types of medication patients are on, for example, and that can help when designing the study. It gives you a deeper insight into designing trials that patients can actually comply with and that will give you good quality data.”
That same openness seen online also represents the flipside of social media, however.
“Social media is very challenging when you are trying to execute a clinical trial and you have patients online talking about their clinical trial experience. I don’t know how you can prevent that but it definitely has the potential to introduce bias and compromise the integrity of clinical trials,” she explains, adding that this is where some companies may stop “socially” listening.