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According to the IMS Institute for Healthcare Informatics’ ‘Engaging Patients through Social Media’ report, the top 100 Wikipedia pages for healthcare topics were accessed, on average, 1.9 million times over the last year, with tuberculosis coming top at 4.2 million views.
Given Wikipedia is, according to an article in the Bulletin of the World Health Organization, the most used online healthcare resource globally, it is important to know what information patients are finding when they get there and how the pharma industry can improve it.
Misleading the Public?
In June of this year, The New England Journal of Medicine investigated this exact issue by studying the content of healthcare-related Wikipedia pages, identifying safety warnings for 22 prescription drugs that are indicated for a range of clinical conditions. Collectively, those drugs had triggered 13 million searches on Google and five million Wikipedia page views annually during their study period. FDA safety warnings were associated with an 82% increase, on average, in Google searches for the drugs during the week after the announcement, and a 175% increase in views of Wikipedia pages for the drugs on the day of the announcement. But they found 23% of Wikipedia pages were updated more than two weeks after the FDA warning was issued, and 36% of pages remained unchanged more than one year later (as of January 2014).
The potential for Wikipedia pages to mislead the public is further highlighted by Dr Mark Hooper, Director at Conversis Medical, who uses the example of the film 'The Constant Gardner', based on a book by John le Carré. The plot involves a clinical trial. Hooper explains that the film includes deaths, shooting and mayhem, and is nothing like any clinical trial he has ever seen. However, when he looked up information about the film on Wikipedia, he found that the page asserted it was based on a real event which took place in Nigeria.
It was claimed that eleven patients had died, implying this was as a direct result of the trial, when in fact the trial had actually compared a new drug for meningitis with the best established treatment available at the time. Six patients died while on the current medication, while five died using the new treatment, which, Hooper emphasises, is not claimed as a significant improvement, but neither is it worse. He has since updated the page to ensure it offers a fair account of the facts, but he believes the wider pharma industry must ensure all updates on Wikipedia are accurate, particularly as the site is such a useful way to disseminate information.
Gill Hayes, Global Director of Communications for R&D at AstraZeneca, agrees, and believes that in drug development, anything that prompts a conversation between a doctor and a patient is a good thing, referring specifically to the public self-diagnosing through online searches. While she believes that there are holes in how Wikipedia is put together, using it as a stimulus for getting people to engage with their GP and question why they are being recommended a certain treatment is good patient empowerment.
Of course, there are plenty of other websites where patients can gain information, including WebMD, which the FDA actually partnered with back in 2008 to expand access to timely and reliable information for consumers, while in the UK, the NHS offers the public a symptom checkers website. But Christian Gardner, Director of Media Services at pharmaphorum.com and former Digital Communications Manager at AstraZeneca, states that the IMS report indicates people trust Wikipedia, and believes that pharma companies have a responsibility to contribute to the content on the site. After all, he adds, patients are actually very unlikely to go directly to their corporate websites.
However, at the moment, Gardner believes that Big Pharma regulations restrict their employees from contributing to Wikipedia, as by doing so they would essentially be updating the page on behalf of the company – thereby requiring various levels of approval. On the other hand, he is quick to point out that this is a huge opportunity; after all, the pharma industry has the experts and scientists who can engage with healthcare professionals, and who are best-placed to provide informed opinion.
So outside of the big information sites, what more can pharma companies do to engage directly with patients through social media applications such as blogs, forums, Twitter, Facebook, YouTube and LinkedIn?
Gardner believes that while the rules and regulations involved in engaging with patients through social media can make it a minefield for pharma companies, it is not impossible to come up with a successful marketing strategy. However, many are slow on the uptake – possibly due to the fact that measuring the effectiveness and return on investment of social media, as well as regulatory concerns, were both listed by 78% of health and pharma executives worldwide as their leading hurdle to social media adoption. But this situation seems to be changing.
KPMG’s ‘Transforming healthcare: From volume to value’ report indicates that pharma executives expect their promotional activity will become much more technology-based, with 43% of them expecting to increase their communication to promote products through social media. At the same time, according to research by Accenture last year, over half of pharmaceutical executives list mastering multi-channel marketing and improving digital effectiveness within their top strategic priorities.
Gardner thinks there is a growing acceptance within the pharma industry that social media is becoming so central to communications, and is increasingly being considered in terms of budget, size of team and required resources, that we are now seeing a real growth of acceptance more generally. When Gardner was at AstraZeneca, he formed part of a team that was led with that mind-set – one project he became involved with was the launch of an external science blog called Lab Talk, which was seen as a big step at the time as it meant opening up to engagement, but also brought additional responsibility as another channel to monitor and manage. However, his team succeeded in getting the site live due to the genuine support and buy-in they had from the leadership, who opened doors with the regulatory and legal teams and pulled together approval models that helped channel work and made their jobs much easier.
But as pharma companies look to engage with patients through social media, great care must be taken in what is published online, even if they believe they have followed the correct procedures. For example, the IMS report referred to a case in August last year where AstraZeneca had to pull a Twitter campaign from the Associated Press’s Twitter feed. A reference to a prescription drug could be seen if the ‘view summary’ link was selected within the tweet, which redirected to AstraZeneca’s YouTube channel – this resulted in the product name being included without the required safety information, breaching regulations.
The issue of regulatory compliance is understandably confusing for patients. In the US, the FDA allows pharma companies to market directly to patients, but the rules are very different under the Association of the British Pharmaceutical Industry (ABPI) in the UK and EMA in Europe, and information is easily accessible through social media whatever territory you may be in. While Gardner cannot ever foresee a merging of global regulations, he does believe the ABPI needs to advocate good examples of social media practice, sharing innovative but compliant examples from pharma companies.
Adverse Drug Reactions
Another important area that the IMS paper discussed was the major legal challenge faced by pharma companies around adverse drug reaction (ADR) reporting, as they are obligated to declare all known ADRs to regulators for the purpose of drug safety. The report went on to explain that if a company is monitoring social media channels, then it may also become responsible for reporting ADRs that come to light through this medium. However, by not actually having a formal social media strategy in place, companies can avoid this regulatory burden.
Gardner explains that if a pharma company is not using Facebook to talk directly to patients, then monitoring it is not their responsibility; but if they do, they must monitor all activity 24 hours a day, responding when necessary with information such as how the patient can get in touch in an emergency.
Speed of response is another hurdle to overcome, especially when dealing on a global level, as information needs to be distributed in the appropriate languages for each country. Coupled with this is the fact that social media has created a new language of its own, with shortened words that are not so easily translatable or localised.
Dr Hooper, whose company, Conversis Medical, specialises in translation and localisation in the pharma sector, stresses that, in urgent situations, or when crisis communications are taking place, companies should still use professionals – ideally local translators – who can provide regional expertise, while keeping control centralised. This means ensuring that urgent social media updates are translated by people rather than via free online translation tools.
As for the future, Gardner believes that with the right digital listening tools, there is a real opportunity to go far beyond responses to ADR, as patients share a great deal of information online about how they access drugs and what their experiences are in taking them.
He believes that better patient engagement is crucial, but he also feels that social media can provide pharma executives more air time, giving their companies more credibility and personality – just as the rise of online video has done in the last few years. This still applies even if it is necessary to enlist the support of a communications team.
Naturally, there may be concern over the fact that the more senior management shares information, the potential for protest groups to reach them increases, but these are challenges that need to be overcome if the pharma industry really wants to embrace this opportunity to engage their patients.
Russell Goldsmith has been involved with online marketing since 1995 when, at software house Harlequin, he set up an e-commerce website to sell their software. In 1996, he moved to Foresight Media, overseeing the web presence of clients that included BBC Radio 2 and Oracle before becoming Digital & Social Media Director at markettiers4dc, the UK’s leading broadcast communications specialist, where he focussed on producing and streaming live and interactive content, on-demand videos and audio podcasts for brands and large corporations that in the last year have included BMW, P&G, Save The Children and Open University. In 2008, he co-founded How To TV and launched its interactive video technology, LinkToTM, and in 2014, founded Audere Communications.
Russell is an active member of the Chartered Institute of Public Relations’ Social Media Panel, contributing to both their Share This and Share This Too books.