Science Intelligence and InfoPros

“… despite the advent of social media tools and accessible mobile communications devices, the patient-doctor relationship has changed little“

Peter DeVries of the Department of Finance, Accounting, and CIS, at the University of Houston – Downtown

Reported by:

Can Social Media Solve The US Healthcare Crisis? Medical News Today, 13th of May 2012. Available from:
http://www.medicalnewstoday.com/releases/245278.php

From Science 2.0 to Pharma 3.0:

Semantic search and social media in the pharmaceutical industry and STM publishing

Hervé Basset, Science Intelligence, France, David Stuart, King’s College London, UK and Denise Silber, BASIL Strategies & Doctors 2.0 TM & You, France

Chandos Publishing Social Media Series No. 7

- gives a global overview of success and failure in Science 2.0
- presents useful stories and lessons learned
- gives a clear view of how semantic search is present in science platforms and its potential in STM publishing
- offers realistic perspectives written by experts in contact with research and medical communities

Science 2.0 uses the resources of Web 2.0 to communicate between scientists, and with the general public. Web 3.0, in turn, has brought disruptive technologies such as semantic search, cloud computing and mobile applications into play. The term Pharma 3.0 anticipates the future relationship between drug makers and doctors with their patients in light of such technology. From Science 2.0 to Pharma 3.0 examines these developments, discussing the best and worst of Web 2.0 in science communication and health. Successes such as the Open Access phenomena and also less successful networks are covered. This title is divided into three parts. The first part considers the Web 2.0 revolution, and the promise of its impact on science communication and the state of Science 2.0. The second part looks at impact on Pharma and Health, including attempts to utilise digital in Pharma. The last part looks at the promising disruptive technologies of Web 3.0, including semantic search in biomedicine and enterprise platforms. The book concludes by looking forward to developments of ‘3.0’ in Pharma and STM publishing.

Readership: Those interested in Science 2.0 and Pharma 3.0., including researchers, information professionals, and managers.

ISBN 1 84334 709 1
ISBN-13: 978 1 84334 709 5
To be published in August 2012

http://www.woodheadpublishing.com/en/book.aspx?bookID=2767&ChandosTitle=1

An excellent study about how pharma companies use of the internet through direct-to-consumer (DTC) advertisements on the internet and internet based “social media”. To identify examples of fraudulent DTC marketing they used 4 major sources of information: scientific literature, gray literature, PubMed and the FDA website.

Some findings:

• FaceBook: Pharmaceutical companies use this interface to promote drug sales. In July of 2010, the FDA issued a warning letter to Novartis for its Facebook advertising. Many companies removed their Facebook pages after August 2011, despite the fact that companies can delete these comments as soon as they are posted they were concerned that “open walls” would lead to the reporting of side effects, promotion of off-label use or inappropriate statements
• Youtube:  A number of pharmaceutical companies have established YouTube channels for marketing purposes, including Abbott, AstraZeneca, Bayer, Boehringer-Ingelheim, GlaxoSmithKline, Lilly, Novartis, Pfizer, Sanofi Pasteur… while the issues of advertising ethics and adherence to existing DTC advertisement standards are raised by these promotional outlets, of even greater concern are the unbranded (or covertly branded) YouTube channels that a number of pharmaceutical companies have introduced.
• Twitter: Novo Nordisk uses the branded Tweet technic that does not mention drug benefits to maintain its status as a reminder advertisement. Web reminder ads do not have to provide any information on side effects.
• Third-party endorsements: People are more likely to believe third party endorsements than identified corporate product advertising. To capitalize on this phenomenon companies have funded patient advocacy groups, disease specific expert panels and physician organizations to promote their drugs. Companies have transferred this clandestine marketing technique to the internet which is particularly well suited to support this subterfuge. Pharmaceutical companies have created websites for front organizations (labeled “Astroturf” sites – for fake grassroots) to promote their drugs. These pharmaceutical company-created websites appear to be unbiased sources of information.

Conclusion: “ Web 2.0 DTC is merely a subset of pharmaceutical marketing; however, as we have shown, it is more likely to be camouflaged, permits companies to directly gather data on patients, and changes rapidly. Internet DTC is difficult to monitor. (…) The majority of the public does not understand the possible side effects and ultimate purpose of DTC advertising; many believe that the mere presence of DTC advertising indicates that a drug is “perfectly safe.”

“FDA has repeatedly cited pharmaceutical companies for illegal Web 2.0 marketing. Pharmaceutical companies have repeatedly called on the FDA to regulate web based marketing but the FDA has refused to issue any regulations. Thus Web 2.0 marketing remains an unregulated threat to public health and the general economy that must be addressed“.

Egilman, David & Druar, Nicholas M. 2012. Spin your science into gold: direct to consumer marketing within social media platforms. Work, Vol. 41, pp. 4494-4502. DOI: 10.3233/WOR-2012-0751-4494

Social media versus social business

The biggest difference between social media and social business is that social media tools provide the platform and the technologies that people use to communicate and create content. Social media is usually used to describe technologies used outside of an organisation by individuals such asTwitter, Facebook and LinkedIn.

Social business on the other hand is the process and result of optimising internal business processes using social media tools. Social business also means applying social concepts and technology internally to create collaboration, sharing, innovation and engagement opportunities. Creating a social business usually means applying social media tools to business processes, but it’s not a requirement, an organisation can be described as being social without necessarily using social media tools.

Mullan, James. Jumping on the social business bandwagon. FUMSI, 24th of April 2012. Available from: http://web.fumsi.com/go/article/share/68638 [Accessed 26th of April 2012]

“While consumers are actively using social media sites such as Facebook, Twitter, YouTube to discuss on health matters, healthcare companies are unable to keep up with the activity of their consumers on social media. (…)

A recent research done by business services firm PricewaterhouseCoopers points out that pharmaceutical and healthcare brands are lagging behind their customers on social media, and are missing out on vital opportunities for growth and improvement based on customer needs and their feedback on the healthcare services being offered. (…)

One-third of consumers used social media sites and online forums to gather more info on health-related matters, seeking medical information, tracking and sharing symptoms, and broadcasting how they feel about doctors, drugs, treatments, medical devices and health plans; one in three had sought information related to other patients’ experiences with their disease; and one in four customers had “posted” about their health experience online.

When asked how information found through social media would affect their health decisions, 45 percent of consumers said it would affect their decision to get a second opinion; 41 percent said it would affect their choice of a specific doctor, hospital or medical facility; and 34 percent said it would affect their decision about taking a certain medication

72 percent of consumers said they would appreciate assistance in scheduling doctor appointments through social media channels, and nearly half said they expect a response within a few hours. (…)

Young adults are leading the section of people using social media for healthcare. More than 80 percent of individuals between the ages of 18 and 24 said they would share health information through social media channels and nearly 90 percent said they would trust information they found there. (…)

The study indicates that there is a strong need for healthcare companies to get more social media savvy and by doing so they can not only connect with their customers, but also boost their business and improve their services.

Swati. April 22, 2012. Healthcare companies are lagging behind customers on social media. Buzzom. Available from: http://www.buzzom.com/2012/04/healthcare-companies-are-lagging-behind-customers-on-social-media/. [Accessed on 23rd of April 2012]

Human behaviours endure beyond technology. (…)

People want to belong to a community, share questions and ideas and engage with each other and how they use tools to enable this is an infinitely interesting area of research.

Read more about the research being undertaken by Edinburgh Napier University’s Centre for Soial Informatics here.  You can read more about Hazel Hall here and access the slides from her publications pagehere.

http://www.infotoday.eu/Articles/Editorial/Featured-Articles/Whats-so-social-about-informatics-81376.aspx

(But it is a good start!)

At last, the agency has issued a draft including social tools (see below an extract), but it is far from satisfying.

“Unfortunately, the draft guidelines finally released last week by the Food and Drug Administration won’t clear up too much of the confusion. The 15-page document (PDF)—and it’s important to emphasize that this is still only a draft—focuses  exclusively on social media discussion of off-label medication use“.

What everybody was looking for was never going to happen. If you’re waiting for divine guidance, you’re still waiting.” Indeed, one unnamed pharmaceutical marketer tells Ad Age that the guidelines are “ambiguous.” But this isn’t the FDA’s only bite at the cherry; other guidelines may come down in the future as the terrain becomes clearer.

Guidance on that subject might not be divine, but it will be crucial, says Torie Bosch in Slate.

Bosch, Torie. FDA Releases Draft Guidelines on Social Media and the Pharmaceutical Industry. Slate, Posted on January 3, 2012.
http://www.slate.com/blogs/future_tense/2012/01/03/big_pharma_and_social_media_fda_releases_draft_guidelines_.html

Leigh Householder, of IQ, is more positive: “The FDA’s perspective on what brands can and should do online is really progressive – and, it sounds a lot like some of the conversations that happened on the floor of those hearings. The challenge they’re facing, of course, is how to adequately act on it.”
http://www.whatsyourdigitaliq.com/inside-the-fdas-first-ever-social-media-guidance-is-a-really-productive-perspective/

Other comments:

• http://www.ihealthbeat.org/articles/2012/1/5/fda-issues-guidance-on-using-social-media-to-discuss-drugs-devices.aspx
• http://www.fdalawblog.net/fda_law_blog_hyman_phelps/2012/01/fda-issues-draft-guidance-on-medical-device-appeals-processes.html
• http://www.eyeonfda.com/eye_on_fda/2012/01/draft-guidance-on-unsolicited-requests-for-off-label-information.html

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Example 8: A firm asks or otherwise encourages users to post videos about their own uses of its  product on third-party video-sharing sites (e.g., YouTube), which may result in video postings about an off-label use of its product. If the firm’s initial request for posting of videos results in any questions about off-label uses, or if any off-label video posting made in response to the firm’s encouragement of video postings results in questions about the product’s off-label use, these questions would be considered solicited requests.

Example 9: If a firm sends out packets of information to known bloggers or online consumer reviewers and encourages them to write about an off-label use of its product on third-party sites and this then provokes a discussion about that off-label use, any requests inquiring about the product’s off-label use as a result of these blogs, whether posted as comments to the third-party site or directed to the firm, would be considered solicited requests.

Example 10: If a firm announces results of a study via a microblogging service (e.g., Twitter) and suggests that an off-label use of its product is safe and effective, any comments and requests received as a result of the original message about the off-label use would be considered solicited  requests.

http://www.fda.gov/downloads/drugs/guidancecomplianceregulatoryinformation/guidances/ucm285145.pdf

Or at least one social-technology tool in 2011, has shown a McKinsey study in November 2011.

Some findings:

• Companies are improving their mastery of social technologies, using them to enhance operations and exploit new market opportunities…
• Executives say that their companies are using them to increase their agility and to manage organizational complexity. Many believe that if organizational barriers to the use of social technologies diminish, they could form the core of entirely new business processes that may radically improve performance.
• Organizations use social tools for internal purposes but have also increased among those that use them for communicating with customers or for integration with partners and suppliers
• The most used tool is Social network (50%), followed by blogs (41%), vidéo (38%) and microblogging which stay marginal (23%)
• Adoption by Industries : HighTech, Telecom, 86% ; … ; Pharma, 74% ; … ; Energy: 62%

If the FDA has announced earlier a new structure (see Phar. Executive, Dec. 2011), the agency has also released a new website on the first days of January.

Mark Senak, the Eye on FDA, has immediately compiled the good points but also a certain number of questions and concerns:

In a few words,

• The new version is very nice and neat. The most compelling feature is that the landing page is CLEAN and follows a logic.  Tabs are nicely displayed at the top to feature each area in which the FDA operates. The information is grouped and organized and the space is not crowded.
• It being new, there are a few bugs: Most of the links on the landing page don’t work, …
• About the new blog, FDA Voice: There have been only three entries since the first which was on December 23. The challenge here will be to keep it real by actually engaging on issues and explaining things in a way that invites dialog rather than “talks at” stakeholders with a point of view.  The blog is nice and clean, …
• About the Social media applications proposed by the agency to improve its communication: he says: “One important and interesting feature was also a display of links to the various social media platforms that the agency has – platforms for which it is two years late on producing a guidance for industry’s use“.
• As a conclusion Mark Senak says: “Congratulations to the FDA on taking this important step on the Internet and social media. Now if they can just take that other step …. the one we’ve all been waiting for“

Senak, Mark. FDA Launches New Look for the Website, Starts a New Blog. Eye on FDA, January the 3rd of 2012.

http://www.eyeonfda.com/eye_on_fda/2012/01/fda-launches-new-look-for-the-website-starts-a-new-blog.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+eyeonfda%2FlpWT+%28Eye+on+FDA%29

There was a year-end deadline, and much debate over how much (or how little) those new rules would change the approaches that drugmakers took. But we rang in 2011 with no guidance, and the revised deadline of March 30 also came and went with no action, and there is less and less evidence that the agency will ever act.

There are 5 major consequences of the FDA decision not to move ahead:

1. Branded promotion has been stunted. Branded promotion online exists, but it has yet to flower, for the simple reason that the risk of being accused of improper marketing far outstrips the benefit of educating doctors and patients. The lack of guidance only inflates this perception of risk and stems the flow of creative ideas.
2. Unbranded promotion has been delayed. There are some excellent examples of pharmaceutical companies doing great, creative work online that is providing clear and obvious benefit to the health care system (including some great work by our clients), but these pilot efforts could have been blooming two (or more!) years ago. Instead, fear and uncertainly slowed their trajectory. Now that industry has figured it out on their own, guidance might not have a huge impact.
3. The public health has (probably) been harmed. While pharma companies — which arguable have more expertise in certain arenas of health care than any other organization — have been shackled on social media, there continues a rising tide of pseudo-science and fearmongering online. The best way to fight lousy information is with good information. Restricting the ability of industry to join this conversation has been a net benefit to those who with an anti-science agenda.
4. Basic questions remain unanswered. No one expected comprehensive guidance, but there has always been hope that the FDA would weigh in on some specific questions, such as whether — in a character-limited environment (Twitter, AdWords, etc.) — pharma companies were required to include or link to an entire package insert. Companies have made their best guesses, but, after years of study, only the FDA knows for sure what the rules are.
5. The agency has opened itself to charges of hypocrisy. The FDA has itself become increasingly skilled with its use of social media tools, even as they refused to push out guidance. It creates an unusual and ironic playing field: the FDA has great latitude to use modern communication tools to inform the public through a variety of channels, but it has stymied the industry’s ability to follow suit.

Reid, Brian. The 5 consequences of the lack of FDA Social Media Guidance. WCG, Posted on December 8, 2011. http://blog.wcgworld.com/2011/12/the-5-consequences-of-the-lack-of-fda-social-media-guidance

MarkSenakbelieves as well that the lack of guidance has meant that social media is not being used in an area where it could do a tremendous lot of good – clinical trial support. One example for the use of social media creatively in clinical trial recruitment is with YouTube.  PharmaYouTubechannels are notoriously under-utilized and the content has largely been lackluster.  Some of the most successful channels in the past, however, have featured patients talking about living with their particular condition.  (…)Using patients to talk about their experience taking a specific treatment is risky from a regulatory perspective – they can easily broaden the indication or make a superiority claim if not heavily scripted.  A patient talking about what its like to go through a clinical trial – not so much.

Clinical Trials and Social Media – Part 1 in an Intermittent Series. Eye on Fda, Posted on December 12^th, 2011.
http://www.eyeonfda.com/eye_on_fda/2011/12/clinical-trials-and-social-media-part-1-in-an-intermittent-series.html