Social media started gaining traction in the early 2000s and has been growing steadily but DDW’s Megan Thomas has observed that it seems to have recently expanded into the world of business and significantly, the wider scientific industries. Here, she unpacks some of the areas in which social media plays a role in the drug discovery world.
DDW recently reported the news that The Pistoia Alliance, a global, not-for-profit alliance that advocates for greater collaboration in life sciences R&D, had launched a new Community of Experts (CoE) with the aim of harnessing real-world data (RWD) from social media. There are a number of reasons why using social media for this sort of data collection is useful. To a large extent, it is unfiltered, it covers a vast spectrum of diverse users, and it is free. Megan Thomas asked Thierry Escudier, Strategic Theme Lead at Pistoia Alliance and Lead of the social media CoE, why this arguably informal platform is so important to utilise. He said:
“The move towards patient centricity – creating the conditions for collaboration and engagement with patients and their representatives – has been gathering momentum for some time. Decentralised clinical trials that employ mobile apps and wearable devices are a particularly successful example of how patients are being empowered to take control of their own health and work in partnership with biopharmaceutical and healthcare companies. Now, we’re seeing patient centricity become more of a consideration not only in clinical phase but also in the early phases of R&D, driven by recent guidance from the FDA and EMA that acknowledges online patient experience research as a powerful tool for collecting comprehensive real-world evidence (RWE) and representative input for patient focused drug development (PFDD).
“With more than 4.6 billion users worldwide, social media enables pharma to capture unfiltered, first-hand data about the patient experience in large volumes. For example, insights into the benefits of a therapy, previously unreported side effects, or new symptoms, which can be used to inform drug development and improve outcomes for future patients. Since social media is largely uncharted territory for the life sciences industry and is a typically informal and non-standardised ecosystem, the next step is for biopharmaceutical companies and software and technology vendors to come together to build a consistent framework and best practices for how to compile, harmonise, share and analyse this data securely.”
Confirmation that social media is being taken seriously as a means for data collection in research is evident in the publication of a paper in Nature on 13 December 2022 entitled, Democratize social-media research — with access and funding. The study’s authors wrote: “Many studies, particularly those testing interventions, are almost impossible to replicate independently because they are so expensive. High costs also confine studies to well-funded institutions and teams (such as ours) that partner with tech companies. Such collaborations can put the independent scrutiny of findings and fair academic competition at risk, particularly in countries that are not WEIRD (that is, Western, educated, industrialised, rich and democratic). Furthermore, unilateral curation of data access by tech companies — in part because of user privacy — could limit our understanding of important phenomena. […] Social-media research should be democratised to address these concerns. As starting points, we suggest creating shared protocols for accessing social-media data, setting up a pooled research-funding scheme and improving access to affordable advertisement credits.”
These sorts of protocols will need industry standardisation, which companies such as PatientMetRx, an AI-powered social intelligence service from UK data tech company Talking Medicines, seem to understand. The company has recently been launched to give drug brands insights on patient experience on a scale and depth never previously possible. According to PatientMetRx, the company combines Machine Learning and Natural Language Processing to capture the voice of the patient from millions of conversations taking place over multiple sources including social media, forums and blogs, mapped to a curated database of 130,000 regulated global medicines. It then summarises what patients are saying online as well as what they are feeling, into data insights which are fully pharma compliant.
Social media campaigns
In March 2022, DDW shared new research from the International Longevity Centre (ILC) in London, UK, has found that social media advertising can be a cost-effective way of engaging older people in deprived communities with vaccination. This research reiterated the sense of democratisation that can come from using social media in this way – while the average geriatric may not be inclined to stay on top of the latest science, they may well be on Facebook. Sophia Dimitriadis, Senior Economist at ILC and lead researcher on the project, said: “Social media often gets a bad rep, especially surrounding the disinformation and fake news it can be used to spread. But we’ve shown that social media has huge potential when it comes to immunisation – including for people living in deprived communities, who are typically hard to reach through the traditional healthcare system. The more campaigns like this we see, the better understanding we’ll build up of what works and what doesn’t when it comes to using social media in a positive way to increase vaccination uptake. The case isn’t closed.”
Later in 2022, DDW wrote about how the ‘Ice Bucket Challenge’ funded FDA-approved ALS treatment. Social media as a means of fundraising has always been a contested issue but it has also been a consistently successful tool, and while the celebrities and civilians alike who tipped buckets of ice water over their heads in the summer of 2014 may not have known the outcome that was to come, the 17 million people who posted videos to Facebook raised over $115 million for the ALS Association. Now, the US Food and Drug Administration (FDA) has granted approval to AMX0035, a new treatment for people living with amyotrophic lateral sclerosis (ALS), which was developed with $2.2 million from the ALS Association.
Misinformation and politicisation
Apart from some of the obvious downsides to social media such as the aforementioned security and standardisation, there is also the issue of misinformation which breeds scepticism and mistrust. As shared by DDW, a report, Confidence in research: researchers in the spotlight, by Economist Impact and supported by Elsevier, revealed researchers’ outlook on the global research landscape and concerns around misinformation, online abuse and widening of inequalities. Significantly, more than half of respondents expressed concern about the challenges of over-simplification (52%) and the politicisation of research (56%) because of increased public attention and social media focus on the research process. Yet fewer than one in five (18%) feel highly confident in communicating their findings on social media. Not surprisingly, researchers are concerned about the challenges of greater public interest in scientific research, but most believe it has never been more important for them to engage in debate. Perhaps finding the balance between the convenience and effectiveness of social media, and the quality of the content being shared, will be the biggest obstacle to overcome in this regard.