Understanding the patient journey with strategic social intelligence


The age of patient-centricity and participatory medicine is fully underway; while debate continues as to what exactly patient-centricity constitutes, social media is helping patients play a much more active role in their healthcare than in the past.

The convergence of the patient-centric era and the age of big data has not only completely changed the nature of the relationship between patients, physicians, and treatments, it has also opened up new avenues for the pharma industry to engage with patients in a language and via a medium that they understand.

While a successful social media strategy will take account of the many channels and opportunities available, there is a useful distinction to be drawn between social media which is aimed at influencing patient behaviour, and activity which is designed to discover information about patient behaviour. As shorthand for these we can use social engagement and social listening, or even more concisely push social media versus pull social media.

"Non-compliance represents an enormous cost to the industry and to society"

Comply or die

Push activity is aimed at delivering information to patients which might assist them with managing their condition, perhaps improving patient adherence in the case of chronic conditions (where adherence is estimated by the World Health Organization to be around 50%) and in an investigational setting, where Osterberg & Baschke have estimated clinical trial adherence as ranging from 43 per cent to 78 per cent.

Non-compliance represents an enormous cost to the industry and to society; it is estimated to have global costs to the pharmaceutical industry of as much as $956 billion globally, according to data presented by Thomas Forissier from Capgemini Consulting and Katrina Firlik of HealthPrize Technologies at the 2013 RxAdherence Conference. While some might dispute this astronomical figure, there can be no doubt that non-compliance represents a real burden to the industry.

In an investigational setting it could be argued that compliance is even more critical: the sample size is smaller and so non-compliance from a relatively small section of the patient population might skew important data and have a bearing on whether a drug is approved and how effective it is. Indeed, it is estimated that a 20% reduction in adherence in a study can result in an increase in the sample size of up to 50% (with the attendant costs) to account for the potential data imbalance.

The use of social and patient networks, groups and personalised messaging via social media are all important tools to bolster adherence and save time and money across the drug development lifecycle and in market.

"Social media sites are an indispensable tool for patient recruitment specialists, and open up an enormous stream of potential patients"

There are also opportunities to recruit patients for international clinical studies via targeted social media campaigns. Many of us will have seen advertisements on the sidebar on Facebook inviting us to participate as healthy volunteers in clinical trials. In an online setting where only 27 per cent of internet users speak English, and Twitter and Facebook support more than 70 languages (to say nothing of non-US based social media platforms like Mixi, Orkut and Sina Weibo), global social media sites are an indispensable tool for patient recruitment specialists, and open up an enormous stream of potential patients.

Those patients must of course meet the inclusion criteria of any study and provide their informed consent to participate. These risk mitigation measures will remain in place regardless of where patients are being sourced, so the common objection that social media is too uncontrolled does not hold.

There do remain uncertainties around how the industry can engage with users via social media from a regulatory perspective, as FDA/EMA guidelines are still not quite clear, but given the cost of delays due to recruitment and enrolment, not to mention the costs of replenishing data lost or skewed due to inadequate adherence, these uncertainties seem well worth overcoming.

The examples above cover push social media in so far as patient recruitment, retention and adherence are concerned. Pharmaceutical companies can influence patient behaviour to improve outcomes by means of social media. Whether this is constructing a more representative patient population by widening the net at the recruitment stage or maintaining active engagement to improve retention and compliance rates in order to improve outcomes in an investigational or a real-world setting, the role of social media is not to be underestimated. Yet it has even more to offer to the pharmaceutical industry.

A perfect circle

Patient engagement teams who are interested in real insights recognise the critical importance of pull social media techniques as well – the insights gleaned from social monitoring can help to inform and optimise a more effective push engagement activity. If you already know the typical patient journey for a particular indication, you are much better positioned to allocate your resources to a push strategy for recruitment, retention and adherence. What of the variables though? How does culture or language affect the linearity of that patient journey?

Social Intelligence provides unique opportunities to align the international business goals of pharmaceutical organisations with patient needs. With a combination of technology which structured social data along the patient journey and virtual ethnography as a research methodology, this approach becomes scalable to gain global multilingual insights, and to inform strategy across the business and the drug development pipeline.

One of the more controversial areas in which Social Listening plays a role is in monitoring adverse events that might otherwise go unreported. Teams must be trained and processes set up in accordance with regulations in regional territories. These teams must make clear distinctions between reportable AEs (which fulfil the four criteria for reporting) and non-reportable AEs (which will be the majority of cases). Some argue that the level of reportable AEs is negligible and that social media monitoring creates more problems than it solves; we find that this varies by region and indication.

There are additional opportunities for feasibility teams to take advantage of social listening as part of a patient identification strategy, to determine where patients and investigators might be located.

"A key element of patient-centricity is accounting for linguistic and cultural nuances"

One key question in all of this is how language and culture affect the outlook of patients on their diagnosis and the level of support they need – and also how it bears on their definition of their sense of wellbeing.

An effective social monitoring strategy will provide insights such as:

• How did the target groups define their sense of wellbeing? Does it line up with definitions of remission/management/treatment?

• What kind of information do patients seek and where do they seek it? How can this help the organisation to develop materials to manage patient expectations in each region?

• What are the characteristics of the patient journey for X indication in Y region? How do language and culture affect this data?


This innovative approach can enable global pharmaceutical companies to make decisions about programme development quickly, cost effectively and with a global patient-centric lens. This approach is based on the notion that one size does not fit all patients when it comes to a social media strategy, and that a key element of patient-centricity is accounting for linguistic and cultural nuances, not only differences based on indication and region.


About the author:

Chris McCourt is a Global Consultant in SDL's Life Sciences Solutions division.

SDL is a top 3 provider of language, technology and business intelligence solutions to international pharmaceutical and medical device companies and contract research organisations.

Chris can be reached on cmccourt@sdl.com or +44 (0)7715 798981

For more information on SDL's portfolio of Life Sciences Solutions please visit http://www.sdl.com/solutions/industry/life-sciences/

Have your say: How can pharma take linguistic and cultural influences in patients into account more?

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Linda Banks

3 July, 2014