It is time.
Time to prove that quality health information in the hands of empowered patients leads to improved health, also in Europe.
Time to demonstrate that social media provides this quality health information to millions of patients each day, even in Europe.
Time to make concrete proposals on how social media can efficiently and safely provide patients with quality information, right here in Europe.
Yes, it is time! …and the time is right.
A new EU health chief, John Dalli, just seized the control over the EMEA (the EU equivalent of the FDA). This new appointment is moving pharma policy out of the Industry and Enterprise into the Health and Consumer policy portfolio. Mr. Dalli will lead this porfolio over the next 5 years and I hope that we can convince him to make improved health information for patients in Europe one of his top priorities.
I would thus like to warmly welcome Mr Dalli and his colleagues at the EU and invite them to listen, engage and collaborate with us: EU healthcare, pharma, patient, legal and medical content tweeters and bloggers (#hcsmeu).
I believe that together we can advance the important discussions around patient empowerment and health information policy changes needed in Europe along a couple of important dimensions:
First, we have to demonstrate that social media has become a main source of health information for patients in EU and that this has impacted patient decision making and behaviors.
Below three pieces of evidence I gathered to this respect, but I am sure there are many more.
1. According to this study by Manhattan research (European Pharmaceutical Marketing, 2008), empowered EU patients talk to their physicians about health information they find online:
-Nearly 150 mio EU patients have accessed health information online
-50 mio of them are talking to their physician about what they found
2. Another study, Media Scope Europe 2008, demonstrates that European health consumers with Internet access search for health information more often. The “golden youth” (25-34 year old) segment in Europe uses Internet as a main source of information, at par with TV. Below you also see that this particular segment of has sought 16% more health information, as a result of increased internet access.
3. Finally this study, by the JRC Scientific and Technical Reports, evaluated social media in Europe from an Information society and economy policy perspective.
It came to the conclusion that social media in Europe can transform healthcare through:
- Enabling quality information exchange between and among like-minded groups of patients, health professionals, industry and the public administration.
- Empowering the health consumer to opt for wellness and prevention principles and empowering the patient to contribute to his/ her own treatment.
- Facilitating medical education and training and also collaborative biomedical research, especially in relation to rare diseases and related medical trials.
This is obviously a very, very modest beginning in gathering evidence on an EU level. It is a shame that we do not have a European version of the Pew Internet Research center! Yet, I am sure that we have many more local and EU-wide studies that we can gather to support and construct a more complete picture of how patients use the internet across EU to improve their health decisions.
Second, we have to propose robust social media regulatory frameworks. Frameworks that enable the transfer of important information from pharma to patients whilst efficiently protecting them from manipulation and misinformation.
During the FDA hearing that took place in November, some frameworks for social media regulations began to emerge. Most of them, seem to be aimed at enabling DTC advertising in the social media arena. My #hcsmeu co-founder and collaborator Andrew Spong and I do not believe that DTC is the right framework to approach social media, in general and especially in Europe.
Unfortunately, DTC, or more precisely the fear of it slipping in through the back door, has held up most EU reforms on patient information sofar. It will also most likely be the biggest hurdle to social media adoption in health care in Europe in the future. This example of the adventures of a Danish journalist vividly illustrates how much even simple product information is feared in Europe and how this fear, pushed to its extremes, can end up infringing upon freedom of speech.
Beyond DTC the FDA hearing outlined many good solutions though that, if implemented globally could work to improve the life and safety of patients.
Let me outline a few below:
Manage product information, despite the fear of DTC: The way to go about this, in my humble opinion, is to collaborate with patients online to understand what product information they need to make informed choices about their health. Once the authorities understand these needs, they can define the line between product information and promotion. They will also be able to understand the best mechanisms to deliver this information to patients (ie. through pharma sponsored sites and content vs. independent sites and content).
Endorse good health information: Generally speaking, I believe that the regulatory authorities in the US and Europe have to move from repression of bad information to endorsement of good information. A simple logo indicating that a particular piece of information was reviewed by authorities can go a long way. This solution was proposed by PhRMA at the FDA hearing. I believe this is a great way to ensure patients receive high quality information online. It should furthermore be self-perpetuating as social media values high quality content and reciprocity. If a piece of information gets endorsed, it will become the best ranked in the search engines, which in turn will automatically drive more patients to it.
If the FDA contemplates implementing such a system, the EU should collaborate and facilitate that process. Especially with respect to translation of high quality information into other languages, the EU must take the lead. Good health information in other languages than English is still a scarce commodity at the moment.
Embrace the link: Along with the concept of endorsing good health information over bad goes the approach to linking. Links are the arteries that carry fresh content into the heart of the social media discussions. In order to keep them up to date, flexible but robust policies need to be developed to decide how to define responsibilities for links. Clear decisions need to be taken about when a link constitutes endorsement of the information provided. Again the FDA is studying such frameworks, the EU should follow suit.
Educate the consumer: Finally, I believe the FDA hearing failed to touch on the point of education. Maybe, because the concept of the empowered consumer has been embedded in the US culture for much longer. In Europe though, it will be crucial to teach both health consumers and health care professionals how to correctly evaluate and judge health information. Health care professionals in particular need to be taught, how to teach patients to become educated and empowered participants in their health.
Enable global adverse event reporting: The FDA hearing outlined the potential of social media to improve adverse event reporting. The concrete proposal calls for the use of a MedWatch icon to facilitate and encourage more reporting directly from the social media forums. Also the need for active monitoring of the social media space for adverse reactions by pharmaceutical companies was discussed. Again, I believe the EU should actively reach out and partner with the FDA on these efforts. Improvements in adverse event reporting would constitute a great advance in patient safety both in the US and EU.
I hope my first stab at bringing evidence and ideas to the table will lead to a fruitful discussion on the place of social media in European health care. I would like to leave the new commissioner with a final request: Please befriend social media. It is a powerful tool and can revolutionize the way health care is delivered. Please listen, learn and build trust with us. We are not some radical extremists hanging out on facebook. We are highly qualified professionals and health care activists that want to help you. Please join us on twitter, our blogs and our forums. It is time that we collaborate to improve health care delivery in Europe.