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Building patient-empowered social networks into the new model of healthcare

Patient-empowered social networks are part of a powerful trend in healthcare that sees patients increasingly using online sources to manage their own health. The US already 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.

Social networks highlight the shift to patient-centric healthcare

The established 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 that 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 for their health. “Patient-empowered social networks” act as a mechanism for patients to express these needs and provide a critical source of real-time patient insights.

A range of patient-empowered social networks have already formed, all of which possess rich valuable information. Some patient-empowered social networks 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 demands from patients using these health-related social networks include access to the best medications, knowledge of the latest trial data, and real-time adverse events reporting.

From pharmaceutical companies, the development of patient-empowered social networks demands a balancing act. They must realise the benefits of patient-empowered social networks and at the same time mitigate the risks to their brands from unregulated data.

Balancing the benefits and risks of health-related social networks

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 patient-empowered social networks. For example, we saw recently negative publicity arising 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, patient-empowered social networks 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 $2 million has already been awarded to conduct further research in this area.

A new source of clinical data

Patient-empowered social networks will also positively assist pharmaceutical companies in obtaining valuable clinical data and potentially identifying relevant patient populations for future clinical trials. For example, a 2008 journal article reported that lithium may reduce amyotrophic lateral sclerosis (ALS) disease progression. In line with this hypothesis, 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 patient-empowered social networks while treading cautiously to protect their brand image.

To find out more about the role of patient-empowered social networks, please contact us now.

Catharine Berwick
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Chris Steel
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