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From monologue to dialogue

How to access and empower patients online

A set of furry creatures, one with a speech bubble coming from its mouthAcross Europe, people have stopped relying on family doctors to provide health information and are turning in their millions to unregulated online self-help sites to find information on diseases, medicines and general health advice. The European pharmaceutical industry is well placed to offer advice but is largely prevented from providing even the most basic information about its own medicines because the EU legal framework still does not allow direct communication about prescription medicines to patients.

This information vacuum has led to an explosion of unofficial health sites and information inequalities across the region. To address this, the European Commission is working to make certain information available to its citizens on the basis that a more informed public – able to interpret data and evaluate both risks and benefits about available medicines – can only be achieved through access to reliable, educational information.

While supporting the ban on direct-to-consumer advertising of prescription medicines, the European Commission's goal is to create consensus about the future direction of the supply of health information to patients. This presents a real opportunity for the pharma industry to become a reliable and trusted partner in determining the next way forward in reaching patients with appropriate, fact-based information.

Social media – why now?
Like most other regions around the world, social networking is achieving unprecedented levels of usage with 130m Europeans engaged in peer-to-peer conversations and turning to the internet to fill their health information needs.

Of the health information that exists online, however, much is of poor quality (most European countries have no effective restrictions in place to prevent groups or individuals writing or commenting on medicines for which they have no qualification or legal responsibility).

Additionally, there is a surprising dearth of available information in the rich patchwork of languages that make up the region (most sites are in English), and to date, there are few available provisions for the sharing of information between Member States.

There are, though, some good examples of cooperation between industry and some Member States across the region that constitute the beginnings of online conversations (Sweden's "FASS" system and the UK's "Medicines Information Partnership"), but none of these experimental initiatives yet fully fosters engagement through any sort of two-way conversation with – or between – patients.

To overcome the regulatory hurdles, industry is looking for ways to partner with regional regulatory authorities to engage with the patient. One of several suggestions being put forward is a trust mark logo, developed in partnership with regional regulatory authorities and used across all European approved patient materials and information portals across the region.

Industry as information engine
In spite of legislative confusion, there are a number of ways in which the industry can embrace social media approaches to help shape conversations and facilitate better patient interaction.

Whether or not the European Commission ratifies the current pharma package proposals, the stage is set for the introduction of social and digital media strategies that can:
1) Increase availability of high-quality information
2) Make information consistent between Member States
3) Encourage early diagnosis leading to a better quality of life over a longer period of time
4) Improve adherence to address the 50 per cent of medicines not taken as prescribed.

The fear of direct to consumer (DTC) creep may not easily be overcome despite the overwhelming evidence that European pharma industry does not want to move toward a US-style DTC environment. As it did for the FDA social media hearings, however, "Industry can channel its resources to enable and amass data that health authorities might use in shaping policies that can adapt to our increasingly online digital age," says Pfizer's Alvine Assene-Ekoumou.

To move forward, industry should begin communicating with patients through online conversations to establish and better understand what product information they need to make better-informed choices about their health and for having more productive conversations with healthcare providers. Using this as a benchmark, regulators will be more easily able to establish boundaries between information and promotion and thereby draw a line in the DTC sand.

From monologue to dialogue
Having benchmarked the needs of European patients, guidelines will help shape the future interaction between pharma, the regulatory authorities and patients. By agreeing to a recognised process of endorsement between the parties, the process of reform could begin with pharma taking the lead to create:
1) A European patient study to agree on essential elements of product information and disease state education
2) An EU Commission and Industry declaration on patient access to healthcare information
3) Better educated patients to improve physician-patient dialogue
4) A global adverse event reporting mechanism.

Georg Toufar, director of European Sales & Marketing, Mundipharma International says: "By taking on the pressing need for bringing EU government-approved reliable and accurate information to the online EU community at large, the stage will be set to move to a new phase of communications that can have an even larger impact: going from information provider to community facilitator. It is in the online communities created by and for patients and carers that real patient access and empowerment begins – leading to improved diagnostic processes, better adherence and patient safety."

What US social media projects demonstrate on topics as diverse as ADHD, breast cancer, fibromyalgia and diabetes is that patients talking to patients – sharing stories and experiences and reducing feelings of isolation – can be powerful online encounters that fuel productive physician-patient interactions that can positively impact care or promote appropriate diagnosis sooner. These epiphanies and empowerments hold true for carers as well. Simply creating forums for people to access medically accurate information and to engage in dialogue with others who have 'been there' can be one of the most powerful contributions industry can make to the European information landscape.

Facilitating this with regulatory authorities is another matter, of course. But the best way to solve a problem is to play an active part in creating the solution – together.

The Author
Mark Cater is MD at Chamberlain UK
He can be contacted at

To comment on this article, email

11th October 2010


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