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Pharmaceutical companies must build patient empowered social networks into their evolving patient-centric business model

Jasveen Chugh, PA expert in healthcare consulting, look at the role of patient empowered social networks in the future of healthcare provision.

Social media is here to stay; patients are increasingly utilising information from this channel to better manage their own health.

The use of social media is growing exponentially. Consumers are becoming more vocal through sharing of information in online forums, social networks, videos, blogs and chat rooms. Today there are over 500 million active users on Facebook and an estimated 184 million bloggers worldwide with 42 million of these in China. 

The healthcare industry is experiencing similar growth in the use of online social media as we are seeing consumers become increasingly pro-active in managing their own health online. Currently it is estimated that 10% of the US population are already using mobile personal health records. Consumers are seeking health information online through websites such as: patientslikeme, WebMD and Sermo. 

These sites provide a communication forum for online patient communities and already the US has ~60 million adult consumers of health information with ~20 million of these being online patient opinion leaders through social networks for cancer, diabetes, HIV and other disease states.

As pharmaceutical companies evolve to a patient-centric healthcare model, they cannot ignore social networks, which provide an important source of patient opinion

The long-time product-focused healthcare business model is evolving into a patient-centric model. To alleviate the cost and care burden we are seeing healthcare move towards consolidated models of end to end care which emphasize disease management and wellness. Within this evolution, patients have greater concern for their wellness, are seeking convenient care options and have the desire to take more responsibility over their health. “Patient empowered social networks”, or PESNs as we are terming them, act as a vocal mechanism for patients to express these needs and provide a critical source of real-time patient insights. 

A range of PESNs have already formed, all of which possess rich valuable information. Some PESNs such as connect over 100,000 patients who can share symptoms and treatments, while others such as or (for orphan diseases) are smaller and focus on specific disease areas. Common patient demands include access to the best medications, knowledge of the latest trial data and real-time adverse events reporting.

It’s a balancing act; pharmaceutical companies must realise the benefits of patient empowered social networks and mitigate the risks of unregulated data on their brands

The ability of online social networks to rally mass support has the power to yo-yo brands from positive to negative within minutes. So, pharmaceutical companies need to be cautious as they leverage PESNs, as we saw recently negative publicity arose via Facebook when a page entitled “Shame on you KV pharmaceuticals and CEO Greg Divis” was created. In response to KV’s launch of Makena, a drug for premature births priced at $1,500 per injection, ~550 consumers appeared on Facebook within days of launch to protest at the high drug price. 

Conversely, PESNs have been seen to positively shape R&D strategies and direct research funding. A recent “Nature” article became famous through YouTube, Twitter and Facebook when MS patients drew attention to Canadian researcher Paolo Zamboni’s theory that multiple sclerosis (MS) is caused by malformed neck veins and that vein widening would reduce symptoms. MS patients lobbied to encourage governments to fund vein widening treatments. As a result $2million has already been awarded to conduct further research in this area. PESNs will also positively assist pharma in obtaining valuable clinical data and potentially identifying relevant patient populations for future clinical trials. 

A 2008 journal article reported that Lithium may reduce Amyotrophic lateral sclerosis (ALS) disease progression. In line with this hypothesis, patientslikeme assisted patients in running their own online clinical trial, even offering the tools to collect patient data. While the study showed that lithium did not reduce ALS progression the trial ran successfully over a 9 month time period with over 600 participants. PESN-coordinated clinical trials will be no substitute for highly regulated FDA trials so pharmaceutical companies will have to manage patient demands for real-time treatment change based upon unregulated trials.

We are moving into a new era of healthcare in which patients are demanding a greater say in their healthcare treatments. Pharmaceutical companies will need to leverage the rich information being generated in PESNs while treading cautiously to protect their brand image.

PA Consulting Group are currently exploring the implications of social media on the life sciences and healthcare industry. 

The author would like to thank Jim Andrew, Ian Rhodes and Richard McIntyre for their contributions to this article.

To discuss the role of patient empowered social networks in the future of healthcare provision, please contact us now.


California Healthcare Foundation (2008) The wisdom of patients: Healthcare meets online social media. (Jane Sarosohn-Kahn) 

Corporate Eye (17th February 2011) Social networking in China grows exponentially among specific consumer segments.

Creation Healthcare (17th March 2011) “Shame on you” An emerging pharma social media crisis. (Daniel Ghinn)

Digital Pharma (26th April 2011) Bayer UK’s Twitter slip-up.

Firstword dossier (2009) Pharma and social media: The leaders and followers. August

Globe & Mail (27th April 2011) Social media changing the medical funding pardigm, report says. (Carly Weeks)

iCrossing (2008) How America searches: Health and wellness. January. Accessed online. 

Infosys (2011) Infosys’ iEngage social media marketing platform. 

Manhattan Research (2009) Practical social media strategies for the pharmaceutical industry.

PMLive (3rd November 2010) Treading a fine line. (Kaush Gandhi)

StWem (2010) The day when Sanofi’s GoInsulin channel…..went. Accessed online via: July 12th 2010

Trendspotting. (2008) social media on the rise: comparative global study. (Taly Weiss)

Wall street journal (25th April 2011) ALS study shows social media value as research tool. (Amy Dockser Marcus)



Richard McIntyre
Healthcare consulting
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