Time to make the case for social media in European healthcare

Written by Silja on 14 December 2009 in #hcsmeu, EU policy - 11 Comments
hourglass

hourglassIt 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.

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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.

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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.

11 Comments on "Time to make the case for social media in European healthcare"

  1. Andrew Spong 15 December 2009 at 3 h 45 min ·

    This is a landmark post, Silja.

    Thank you for not only offering a trenchant summary of this issues we are considering here in the EU, but also for distilling the content of so many of the discussions the #hcsmeu community has had collectively and individually into a cogent set of proposals.

    There can be no better way of demonstrating a commitment to providing information rather than advertising on pharma’s part than by predicating the process of its production on patient need rather product promotion.

    There can be no clearer signal on pharma’s part of its intention to reform its promotional activities from pushing brands to foregrounding companyies’ oft-cited commitment to improving health than by repressing bad information and facilitating access to independently endorsed, high quality, reliable, relevant, timely, evidence-based information.

    Yes, the industry needs clear guidance to be able to attain these objectives, but it also needs to demonstrate a commitment to embracing social media for what it is – an open, transparent conversation – rather than what it isn’t, but what many would like it to be: another set of channels through which marketing messages can be disseminated and recirculated.

  2. Rob Halkes 15 December 2009 at 7 h 11 min ·

    Great post Silja, and just at the right time! Congratulations!

    As I can see imho, there are now several initiatives from health care providers, health care insurance companies as well as pharma companies trying to step into the field of engaging and interacting directly with consumers/patients. They are in the progress of trying to find out what to do and what not.

    Your points demonstrate the need for
    - a clearing house of documentation and information of what is going on, creating a point of exchange for anyone or party to be involved in this, even better, to step on to existing projects and see how parties can or will collaborate;
    - the need for accumulating research to find out a good and best practice;
    - the need to build knowledge to ground new legislation and codes of conduct – as in my view: we, specifically in Europe, would need a clear framework of rules or legislation as to create a legal basis for experimentation.

    This institution might also bring together the people that want to be active participants in this development where they could work with each other. In my experience, there are a lot of parties that do want to learn quickly from experience from others.

    And it is because of this that I think it is relevant emphasize that we still need a lot of projects and experiments and experience that constitute an accumulating basis of (evidence based) knowledge.
    On this, adequate legislation is possible.

    Why is this a serious need? In experiments of integrated care and telemedicine you can see that matters of organisation, reimbursement and legal aspect are shifting away from old standards.
    So new ones are need that need careful development, to put it right.

    This is not to decrease the speed nor intention to your cause, but to demonstrate how relevant and necessary your call for making the case is!

  3. Daniel Ghinn 15 December 2009 at 8 h 35 min ·

    Silja, you’ve laid the foundation of a great case. I agree with your points about DTC.

    I believe that the non-DTC model in Europe – which on the one hand may be perceived as holding back pharmaceutical companies from fully embracing social media – is in fact a sound model for engaging health consumers in a trusted environment, and may yet allow Europe to lead the way in social media. We are already seeing pockets of innovation in this area. But there’s much more to be done!

    Thanks for stimulating the debate on this important issue for European healthcare.
    Daniel

  4. Joanna Ptolomey 15 December 2009 at 11 h 19 min ·

    Hi all, I am a freelance information consultant who has been following the debate. Many thanks for putting it together so well for us on the fringes.

    As well as writing professionally about the information sector I am especially interested in the use of SM tools and applications. I particularly specialise in health as a research analyst (acute and health improvement), helping organisations and health professionals find and use evidence to drive and deliver health strategies. Lastly but not leastly, I educate health and clinical professionals, information professionals and in some cases public consumers in accessing and using health information.

    I have been following your group tweets with interest over the last few months, you may have see me pop up here and there (@chibbie).

    It is my experience that there is still much work to be done in educating health and clinical professionals, information professionals and consumers in the finding and using of health information. Good quality credible health information portals are required across a range of clinical specialities and health improvement topics. There is also the question of appropriateness of content for different user groups.

    I have been involved in health information literacy projects for a range of different user groups, from professional health workers to consumers and they all have their own unique issues with literacy. As we know health information and evidence is quite unique in how it is assessed. The hierarchy of evidence is very rarely understood by consumers and can be muddled for some health professionals (unfortunately my experience). Therefore messages coming out in the media and good places to find appropriate health content is confusing and sparse.

    I think SM can help, but it needs to be directed carefully. Forgive me for not addressing the subject so eloquently than the other comments. My work takes me to the sharp end with health and information professionals and the public frustrated by inappropriate content, credible sources and dubious health research stories.

    I feel a shift with SM tools and especially with consumer health information being a very hot topic at the moment. I look forward to the developments and optimistic for positive outcomes. Many thanks for all your work

    Joanna Ptolomey
    Freelance Information Consultant

  5. Alexander Schachinger 15 December 2009 at 17 h 19 min ·

    Hi Silja,
    hi to the growing EU Health 2.0 Community,
    dear Regulators and Stakeholders,

    great debate, great progress in the dialogue which hopefully will lead to needed regulations, health 2.0 product- and communication implementation of the healthcare stakeholder´s side for a more cost and outcome effective, patient centric healthcare and medicare.

    But let us have a brief look on what is it all about? The (e-)patient.

    And in doing so i clearly see signs that shift happens, with or without us.

    And this quality is new.

    Clay Shirky points it out remarkable:

    “Philosophers sometimes make a distinction between a difference in degree (more of the same) and a difference in kind (something new).
    […]
    For the first time in history, the tools for cooperating on a global scale are not solely in the hands of government or institutions. The spread of digital media are changing how people and groups come together and get things done.
    […]
    We haven´t had all the groups we´ve wanted, we´ve simply had all the groups we could afford.
    The old limits of what unmanaged and unpaid groups can do are no longer in operation; the difficulties that kept self-assembled groups from working together are shrinking, meaning that the number and kinds of things groups can get done without financial motivation or managerial oversight are growing.
    […]
    Tools that provide simple ways of creating groups lead to new groups, lots of new groups, and not just more groups but more kinds of groups and group action.
    […]
    We are living in the middle of a remarkable increase in our ability to share, cooperate and take collective action, all outside the framework of traditional institutions and organizations. ”

    I hope it became clear what i want to express, namely, that the digital informed, connected and collaborative working together e-patient will help himself as much as possible with or without the network of the healthcare stakeholders. It was once said that those stakeholders look then like “tankers versus speedboats” compared to the e-patient and its progress.

    I will present the main results of a GER based e-patient survey with yet >1900 participants starting from Q1+Q2 2010 on some of eu based conferences on that topic (health2.0, Paris, efp, Berlin). We need more of those surveys. Anybondy who has means on funding a maybe eu scaled e-patient survey please contact me.

    For now and flying over this e-patient survey´s data i only can tell, that from far away it just possibly maybe look like:

    - that the internet is perceived as the most trustworthy and usable source of healthcare information even before the doctor and all other established sources of healthcare information

    - that the websites where e-patients can exchange and help on each other are the most usefull perceived websites, more than other sites of the healthcare stakeholders

    - that around 35-40% of e-patients wanted another treatment or medication based on and after the e-patient exchange online(!)

    - that e-patients want other e-patients experiences with treatments and medications most of all missing digital healthcare application, just like the tools on patientslikeme.com

    We still have to wait because all i can say now is “it may look like”

    best
    Alexander

  6. Miguel 16 December 2009 at 4 h 20 min ·

    Wow! I coudn’t have expressed better these reflections! I fully support the idea of empowering and educating the patients to help them make better informed decisions. I do neither believe that DTC is the right framework to approach social media. And as Andrew added, this is not ‘another set of channels through which marketing messages can be disseminated and recirculated’.

    Rob also touched a very important point: we need ‘a clear framework of rules or legislation as to create a legal basis for experimentation’. The lack of a clear regulatory framework does not encourage companies to experiment. Reducing legal uncertainty should be a priority.

    Finally, as I tried to express during last tweetup, we cannot forget the physician. I think he should continue playing a key role in guiding the patient. He should be the person on whom the patient should ultimately trust.

  7. Silja 16 December 2009 at 14 h 28 min ·

    Thank you, all of you, for the lively reaction and thouhgt-provoking commentary.

    I heard three action points out of your commentary – let me know if there are more:

    1. We need to lobby for more transparency and clarity of regulations regarding social media use in the EU
    2. We need to have a platform where we can collaborate to gather evidence to build the case for social media in EU (and thank you so much Alex for the amazing sneak preview, can’t wait to see the final results)
    3. We need to bring the physicians on board in this initiative and take special care of builing HCP education of social media into our approach – I will bring up this topic in our next #hcsmeu tweet up.

    Thank you so much again. I am so deeply thankful to be part of such an amazing community of engaged healthcare specialists.

    Silja

  8. Philippe Scheimann 30 December 2009 at 17 h 53 min ·

    Jumping into the discussion:

    indeed, it would be great to have in Europe data such as the Pew Internet Research Center.

    I’d like to focus on the necessity to have a robust social media regulatory framework.

    An important issue, IMHO, is the ability to have a mechanism that respects the anonymity and privacy of the people (patients) while, in the same time, keep a high level of trust so that when people read material, they can trust the information and they can also post some information/questions while still being in a private mode.

    Until now, I have not seen examples of such virtual communities.
    Have you?

    These 2 parameters do not go well together and

  9. Kwai Yu 25 February 2010 at 19 h 08 min ·

    Hi Silja,

    Cherie sent me a quick note about you … no wonder she said you were amazing :-)

    I am no Pharma expert at all – however, I did see a recent BBC Horizon documentary about the drug making industry. It is available on YouTube as a 6 part video (each 10 mins long).

    As you know from Cherie, I believe in the power of the social media for good. However, having watch the documentary, I can also see why the industry would be hesitant about having information going viral through social media. I hadn’t realise how much of a lottery it is to make a successful drug for treatment.

    I wonder whether social media would be specifically more useful for passing on information about prevention?

    Here’s the link to part 1 of the video.

    http://www.youtube.com/watch?v=Dr9vX6e_aWs

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