Europe- you need to tackle social media now!

Written by Silja on 10 November 2009 in guidance & regulations - 15 Comments

Researching the latest EU commission view point on social media, I came across this very upsetting conclusion from a review on the state of patient information in Europe:


Today huge inequalities exist in terms of availability and accessibility of information between different population groups and between EU member states.

Health related websites are amongst most frequently visited sources of health information, but many of them are run by dubious sources or contain poor quality and even misleading information.

The inequality is so poignant that the EU commission estimates it may well be harmful to the public health.

Due to this disastrous conclusions of the review, the EU commission felt compelled to investigate a revision of its strict pharma regulations, lovingly called the “pharma package“. The package focuses on three areas of improvement to patient safety and education:

-how to modernize pharmacovigilance in order to improve the safety of medicines

-how to improve patient safety by reducing the infiltration of counterfeit medicines into the supply chain

-how to provide better health information to patients.

I thus investigated with great interest the third point of this package to understand to which extend it could be applied to social media in Europe.

The European Federation of Pharmaceutical Industries and Associations, EFPIA proposes four large headings under which to reform the provision of non-promotional patient information:

1. Pro-active- provide unsolicited information limited to general disease information and covering awareness, prevention etc.

2. Reference- covering information on diseases and medicines that a patient would search for in a library or on the internet

3. Reactive – provided in response to specific questions from patients

4. Support- supplied to support compliance with a prescribed medicine

It looks as though all 4 categories listed are of great relevance to pharma engaging with patients via social media. Unfortunately, I found no evidence in any of the materials reviewed that the EU commission or the EFPIA were including social media in their proposals.

To be fair, even without adding the thorny complexity of social media to the mix, it seems that the EU commission has enough trouble advancing this proposal since it was first introduced in 2008. The proposal was turned down several times already. The last time it was shot down by the 20 EU health ministers this June for three stated reasons:

Firstly, there are some administrative technicalities – supposedly the proposal should have been treated in the DG Sanco commission and not in the Employment, Social Policy, Health and Consumer Affairs Council, EPSCO to make it more credible to the health care community. There also appears to be a lot of unsolved questions around how pharmaceutical companies would interact in this new framework with existing regulatory bodies, like the EMEA for example.

Secondly, there is fear that pharma’s provision of patient information could open the door to DTC in Europe. The health ministers are worried that the lack of clear definitions on what constitutes advertisement vs. information is giving pharma too much liberty in defining its role in informing patients. These concerns from the ministers are reinforced by strong lobbying efforts against these amendments by UK advocacy groups, most of which are quiet heavy hitters: The Picker Institute, the British Medical Association, Royal College of Physicians, Royal College of Nurses, British Pharmacological Society, the Family Planning Association, Mind and Diabetes UK.

Finally, the EU ministers think that giving patients broader access to information could drive up health costs, by increasing demand and because of the need to set up monitoring mechanisms. I was highly intrigued by this last point and wanted to see evidence that indicates that well-informed patients consume more or more expensive drugs. Also this remarks seemed to go against the conclusions of the EU review which indicated that in some instances misinformation can lead to endangering patients

I have to admit that the hurdles outlined above seemed like a bunch of non-issues to me. I am definitely naive when it comes to EU politics, still, I can not resist to offer my advice to the EU commission:

The commission should involve as many stakeholders as possible when discussing this proposal. I am surprised to see such strong UK advocacy against the proposal and to see no other countries participate in the discussion. Especially, patients lacking good English language skills  are disadvantaged with respect to EU health information today, because of the insufficient offer of good quality information in other languages. It looks as though better representation from patient and physician advocacy groups from multiple countries, disease backgrounds and languages is needed to really get the complete picture here.

There appears to be a need to educate the commission and the 20 ministers involved on the value of patient information and the subsequent empowerment. The review that led to the “pharma package” proposal in the first place clearly pointed out that bad information leads to bad health. So why is it that the EU commission appears to put cost concerns over patient safety? Do we not want to create a healthier Europe together with the patient? Only an educated and empowered patient can participate and help save the healthcare systems in Europe.

The  stalemate in the EU commission also frustrated the EFPIA. It announced last week, that it is willing for its information to undergo an independent vetting procedure in an effort to liberalize controls on the provision of information to patients on prescription drugs. The EFPIA hopes that this proposal will prove that pharma can be trusted to self-regulate itself and that its efforts to improve patient information are not a sleezy attempt to get DTC advertising into Europe via the back door.

apercu3I would like to congratulate the EFPIA, and in particular Mr. Higgins, newly elected EFPIA president and Chairman of the Bayer HealthCare Executive Committee, for their initiative. Going down the route of self-regulation and collaboration to ensure European patients gain better and more equal access to information is definitely the right direction for the pharmaceutical industry in Europe.

Finally, I would like to point out that unfortunately, the current “pharma package” does not take into account social media. Social media is the number one vehicle driving patient empowerment today. It can overcome many of the inequalities evoked in the EU review simply by having patients inform one another. As I pointed out in my post on the nearing FDA hearing, patients have already embraced social media actively and successfully to empower their health choices.  It would be a tremendous waste of time to overhaul outdated EU policies, but leave out a culture shift in health care delivery of this size. I believe that social media and patient empowerment (driven by better patient information) have to be considered within the proposal. The EU has to tackle social media now, if it wants to regain its innovative edge in health care delivery.

15 Comments on "Europe- you need to tackle social media now!"

  1. Pedro L. González 10 November 2009 at 17 h 55 min ·

    Absolutely agree with your brilliant analysis and explanation of the situation in the EU. It seems the stronger lobbying groups are physician’s. I think there is a job to evangelize EU doctors in the good that information and education can do to people’s health.
    They resist to abandon the paternalistic medicine. But this is already something from the past due to the evolution of social media among other factors.
    If they don’t acknowldege this and guide their patients to sources of trustable and credible health info, some other will do. I don’t want to imagine our Public Health Systems as mere distributors of ‘official medical prescriptions’ and then patients going to some other places/professionals to cope with their illness and regain wellness.

  2. lucien engelen 11 November 2009 at 17 h 13 min ·

    Agree Silja,

    Just have a look at the H1N1-case, or the HPV-vaccination. recently the Dutch Minister Klink openly stated he has to step in to this communications-model. Some of the @hcsmeu tweeps are now drafting a open letter to this Minister including an petition to lead it in to the EU-commission.

    I have made a little video as opening for REshape 2009 conference, giving some overview on the Social Media front of the Netherlands. But it is mainly used t as a wake-up call.

  3. Kajsa Wilhelmsson 12 November 2009 at 10 h 25 min ·

    I cannot really se how pre-vetting would work with social media? Pre-vetting would mean that all postings on the internet etc would have to first be approved by the EMEA or similar local agencies. Imagine how much that actually would be sent for approval and how slow the process would be…

    But maybe even more important: the reason the Commission proposal on pre-vetting is causing problem is not that industry has been against. Its actually the Swedish presidency that is blocking the proposal and that is because its against the swedish constitution on freedom of speach. Ie it doesnt help that the industry now join forces with the EU commission on this. UK/DK and Sweden still will have to block it or give up on their constitutions.

  4. Angie Wiles 13 November 2009 at 17 h 01 min ·

    Definitely agree on the need for accurate medicines information, Silja. Pharma has an important role to play here, although there is an obvious issue with the industry being seen to be pushing its own agenda. As Pedro highlights, EU doctors (and other key healthcare professionals) would need to be a driving force in reforming medicines information. We’d also do well to show the issues on a ‘real world’ level by illustrating how many patients are harmed by misinformation online. In other words, the misinformation problem needs to be real and immediate for a pharma-involved solution to be viable.


  5. PCSO Lotto Results  19 October 2010 at 10 h 44 min ·

    well, at least there is an HPV Vaccine these days that can prevent HPV infection;.~

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