Get real: Collecting data through social media

Martin Goldman, chief medical officer, Iatros Consulting working with Orbital Media, offers a view on a new way of collecting real world data through social media.

I was recently asked to help a smallish company who got themselves into a bit of a fix. They had a mature medicinal product on the market that had done well over the years, but someone had complained that the promotional claims, which went to the core of the product, could not be justified. The claims were based on a clinical trial had been done many years before and had satisfied the licensing authority. The complainant said that the trial was out of date, and more recent information from later trials did not confirm the original work. Suddenly, the company was faced with the risk of having to alter its promotion, despite the fact that the product sold like hot cakes.

Looking at the sales figures, it was obvious that the product was doing something right, because you probably can’t fool all of the people all of the time. The real experience was that there was customer satisfaction. The answer to the problem was to provide them with real world evidence based on the users’ experience of the product, and to take positive evidence to relevant bodies and get their support.

Whilst the pharmaceutical industry has had almost 70 years of involvement with controlled clinical trials to support medicinal products, in recent times there have been detractors. Trials are experiments with rigid somewhat enforced rules, typically designed to answer a specific primary question usually related to efficacy and/or safety. There are typically other secondary issues. What they can never tell you in the drug development phase is what will happen when doctors and the public get their hands on the medicine. Never underestimate the perversity of people. They will under and overdose on your product, they will only take it when they feel like it, and they may even crush tablets and wash them down with lashings of gin and tonic. Finally, it is possible that companies may restrict the inclusion and exclusion criteria in controlled trials in such a way that they limit recruitment to those most likely to respond to an investigational medicine.

Real world evidence (RWE) is different. It is data based on what actually is happening or has happened in the real world. It is what happens when the brakes are taken off and the Clapham Omnibus of patients is permitted to freewheel with a product, and then tell you what happened. That is a bit of an oversimplification, because one of the better sources of information is the electronic medical records that exist in many places and pragmatic databases such as the Yellow Card system and the General Practice Research Database. The data can inform you about the demography of the user population, the treatment pathways used and healthcare resources usage of the customer base. However, these can only tell you what is recorded within a healthcare system, and certainly does not tell anything about self-treatment.

An intriguing alternative, which is starting to gain recognition, is the use of social media to collect RWE. Thirty eight million people in the UK actively use social media and 50% of the population actively use their mobiles to access their social media. This potentially makes social media an ideal way to find relevant patients and engage them in research. How do you find them? If there are relevant user groups or Facebook groups, it is potentially laid out for you. Otherwise there are many email and targeting portals to access the patients, and it only needs a relatively small proportion to respond to obtain stunning numbers for research as 80% of social media users will typically engage with competitions and surveys and are therefore potentially willing to be your responders.

Converting this asset into meaningful data is slightly more difficult and expertise is needed to tailor platforms to collect and analyse data. In addition, like with all experiments, it is advisable to have a clear idea of what you are looking for, which is typically a marketing claim or health economic outcome. With expert input, the endpoints should be identified and the syntactical and semantic interface developed and tested. Social media platforms are also an ideal way of redefining user demographics, but obviously only for those that are using social media.  Using data collection platforms it has proven possible to implement a variety of previously validated and some novel patient questionnaires, which not only can collect efficacy and safety information, but also more interestingly from a marketing viewpoint can collect data on economic burden to patients and societal impact.