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The growing role of social media in gathering real-world data

By Danielle Barron on Mar 6, 2017

Although it would be facetious to say that social media has reached a tipping point into ubiquity, it is only relatively recently that it has been used by pharma to collect and analyze patient data. This use of social media may only be in its infancy but as a quick and inexpensive way to gather large-scale, real-world data it is growing rapidly.

Technology always outstrips the glacial pace that industry moves at, but this ‘sudden’ move creates a sharp learning curve for many pharma companies. Issues around regulation and resources will hinder some, while others will fail to see the value of ‘social health’.

Popular social media platforms offer new opportunities for learning from patient experiences, says Stephanie Manson, a senior director of HEOR Excellence at Novartis.

Crucially, social media can provide a window into the patient’s world for those working in drug development, she says. “People are looking for practical ways to live with and manage these conditions. Having a first-hand understanding of how patients experience symptoms or how their daily lives are impacted may be valuable in helping to make our work patient-centric.”

Data from social media shows how people really talk about health, says Amr Makady, Pharmacoeconomic Assessor and Policy Advisor at the Dutch National Healthcare Institute. The Innovative Medicines Institute (IMI) Get Real study is exploring the potential for gathering data via social media to supplement other evidence.

“[In oncology], social media has been used to get information on adverse events; other important parameters include quality of life, switching and adherence behavior, and symptom occurrence,” he says, adding that their analysis showed that phrases most used by patients on social media were ‘family’, ‘leading a normal life’ and ‘good care. “Patients don’t talk about adverse events like we do.”

The Get Real study also found that patient priorities, often linked to quality of life, differ as the stage of cancer progresses. ‘Family’ is a key parameter throughout each stage, as well as ‘living a normal life’. “We are mining the internet to find out more about quality of life,” says Makady.

Insight or just chatter?

Unstructured data insights from patients may be collated and brought to life, says Manson, but the question is often ‘So what?’ “It may be helpful to determine how this insight can applied to support meaningful decisions,” she says.

For Makady, that includes quality of life data, which the Get Real project is showing to be a viable option for incorporating patient perspectives using social media, particularly in relation to cancer treatments. “The gains in overall survival may or may not be marginal, and within that increased overall survival we don’t know what quality of life is there. That data is really lacking in HTA [health technology assessment] discussions on evidence at the moment.”

The ‘so what?’ here is that this kind of data collection can be done quickly and reach a much bigger audience, including a patient population that is not part of any randomized controlled trials. “It opens up a lot of opportunities,” he says.

Social media is providing an opportunity to understand quality of life aspects in a way that adds a perspective to clinical trial data, says Manson. “For example, a cancer patient may have grade three neutropenia with a brief stay in hospital (which is a significant problem) or grade one diarrhea for a year. Depending on the patient’s perspective, they may wish to manage a short-term adverse event as opposed to living with a prolonged condition due to the corresponding impact on their quality of life, depending on individual circumstances. Social media can provide an opportunity to better understand how the patients are feeling and what they are thinking in terms of adverse events and quality of life,” she says.

Cancer patients are particularly “heavy users” of social media, says Emma Sutcliffe, Consultant Director, Patient Engagement at Grünenthal. “Across all therapy areas, it is quite well-established that people with cancer want to gather information and share stories,” she says, stressing that we “can’t underestimate” the value of social media for generating insight and generating trial support.

“The technical term is ‘therapeutic affordance’. What they’ve found is that there is merit in making sure that social media tools and communities are part of the advice that our medics give to people living with serious disease. People might come through a cancer diagnosis, but then they might have a life of fatigue or a life of pain – how do they carry on with their lives when their medications have stopped?” she says.

Social media tools have the power to boost other services, says Sutcliffe, who points to a growing cohort of companies with a full portfolio of support systems across all major social media platforms and their own. “AbbVie says it will have a full complement of social media tools for people engaging with their clinical trials; they are using Facebook and Twitter to recruit patients, and apps linked with communities for diary management during the trial itself. Pinterest is used for sharing news, and there is often a Facebook fan page for people within the study,” she explains.

Forecasting health

With more than a decade of social media channels to compare and contrast, companies are starting to see clear signals emerge, says Sutcliffe. “It is becoming much more sophisticated, like a sort of ‘health meteorology’ in terms of public health surveillance. For example, with Twitter, we are starting to see routine use of this platform as a really viable medium to monitor daily events that happen to people with chronic illness. This is providing much more accurate recordings of what it is like to live with a chronic health conditions.”

Interestingly, this data allows companies to generate disease markers earlier, she says, something that is “shocking to those of us that are assiduous scientists. We are getting data from social media channels on public health surveillance quicker than some of the public health institutes. This earlier signaling is fascinating for earlier intervention.”

Manson urges greater collaboration with patient groups and networks through meaningful interactions and engagements via social platforms. She cites a recent digital collaboration with a patient network to understand patient insights about trial design and logistics. “The use of a digital platform can be enabling, collecting unfiltered insights in a timely and efficient way, as well as inspiring further hypotheses and research.” 

Sutcliffe believes that a “default step” to establishing a clinical trial is looking at which social media tools will complement how the trial is run. “These provide regular engagement with patients throughout trial but what we have to remember is that we have to be quite restrictive with some of the information we provide, because we have to be percipient that there is still uncertainty during what is an investigational process.

“We have to be careful that we don’t give the wrong impression that it a licensed product. It’s commendable that companies such as AbbVie are looking towards a full support system of social media channels and are doing that under those necessarily restrictive covenants.”

The willingness of patients to share their data is not in question, says Sutcliffe. “People want to give us this evidence but the patient-generated data and real-world evidence is vastly different to what we gain from randomized clinical trial programs to get products approved.”

She foresees an inevitable “natural collision” between these two different forms of data. “Social media is all about disruption; we are going into an era of patient-generated data alongside clinical trial data, so what do we do as an industry and a sector to clean up the patient-generated data to get insights from that, but also not alarm people who have lower health literacies about the necessity of the traditional placebo randomized control trials? We need to emphasize that we need all kinds of data to make bigger health decisions.”

Approaching this critical juncture, it is essential that the data from both sources is used appropriately. There must be an understanding while both types of data may provide valuable insights, they are coming from markedly different perspectives, Sutcliffe adds.

“We need to start having a dialogue about the data that patients generate, and how we use that in pharma and we also need to have a better dialogue to patients about the necessity for keeping that clinical trial process clean.”

Share and share alike

According to Makady, with this steady stream of data comes a certain amount of implicit trust from patients about how they will use that data. “Typically, with data there are concerns about privacy and ownership but the thing with social media is that it is all already out there, in contrast to more ‘conventional’ evidence sources (eg, RCTs, registries etc.) whereby other governance issues and multi-stakeholder collaborations are at play.”

Sutcliffe agrees that establishing trust is crucial and says many pharma companies are establishing repositories for patient data in a bid to increase trust. “We agonize in industry so much about how we can engender trust with people and there is a great way – we start sharing the clean-up and insights from this data.”

Not all social media insight is created equal. Manson urges caution as to how data from social media is interpreted. She explains that posts from an individual’s Facebook and Twitter may be geared towards that user’s friends, family, or followers, and can be different to that shared on health-focused blogs or patient communities aligned to specific diseases, for example.

“We need to be careful in how we interpret the data and we need to understand where it is coming from. Just because these are all insights from patients doesn’t mean they can be taken in the same context. We can’t use social media as a single brush stroke, it’s more nuanced than that.”

It is also crucial to go back to basics, says Makady. “There needs to be a dialogue among the wider health community as to which insights/information can be delivered to stakeholders through social media, the different sources from which data can be derived (eg, Facebook vs. patient forums) and the different approaches to using social media. There are differences between using social media as a medium to actively collect structured data from patients, for example surveys, and using it as a data mine of unstructured data. Both ways have their own pros and cons, so the wider community is still learning its first steps in how to make use of this untapped source.”

Other obstacles exist for pharma when it comes to digging for real-world insights on social media. Constantly changing regulations around consumer informatics can deter companies from engaging in social media data collection, while for some it may be an issue of allocating resources towards what is a relatively new endeavor.

This ignorance of the value of social health within industry must be addressed, says Sutcliffe. “What tends to happen in pharma companies is that we dilute this social media expertise and out it in this big box marked ‘digital’ when really it is its own discipline. Research shows that one hashtag in a therapy area reaches 2,200 clinicians and receives 80 million impressions. That speaks for itself.”

The opinions expressed in this article are solely those of the contributors. The contributors hereby personally guarantee the accuracy or reliability of the information provided herein. Stephanie Manson was speaking in a personal capacity in this webinar.