A room with a view: the health information master switch


Alex Butler


Continued from “A room with a view: how to measure value in social media – the action based economy

This week has been a very challenging one for me, one that has forced me to consider the very core beliefs I hold regarding the democratisation of information enabled by the social web and the true revolution offered to society by the linking of people around the world.

It is now obvious to most people (the ‘Arab Spring’ being a very pertinent example) that it is not the fabled explosion of information that has made the dramatic difference to society, but the fact that people now have greater access to each other. This facilitates the exchange of information through the drive of human beings to communicate and come together with each other. The fundamental desire to form social groups.

Those of us working with social media in the healthcare environment have talked at length about how greater access to information for patients and the public will improve the overall standard of care and improve people’s lives. It is hard to argue with that. Taking this a step further we also muse about the impact that sharing information without organisational management, such as government or business, can have on people’s lives. Now it is easy for people to come together we can share, co-operate and hopefully drive collective action.

"This week has been a very challenging one for me, one that has forced me to consider the very core beliefs I hold…"

Within health this can be as simple as an isolated, frightened person being able to speak to others battling the same challenges on a Facebook community, right up to community research projects such as CureTogether that share and then gather information on disease management for the collective good.

This week a number of people tweeted about a survey boldly entitled ‘Healthcare websites beat social media as the primary health resource for most people in the US’. Specifically, the article elaborated that health magazine websites, such as WebMD, were the most trusted healthcare resource for consumers. Whilst I think there are many issues with the conclusions of the study I do not intend to go through them in this post.

But, when combined with a couple of other things that have grabbed my attention this week it has sparked a much more interesting question for me.

You see, I have been facing the prospect of trying to map out the online information landscape for the public, media, patients and health care professionals. Where do people go? How do they get there? What do they do when they are there?

I was also surfing YouTube (note to boss - it was a coffee break!) and came across an interview with Professor Tim Wu talking about a book I read at the end of last year called ‘The Master Switch: The Rise &amp, Fall Of Information Empires’. At the time, this interested me, but it didn’t click into place in the context of health information and the social web (not that there is any other kind of web anymore).

As a brief background to the book itself (one I would highly recommend you read) most people who write about the internet and social media state powerfully that the upheavals triggered by the network so far in economics, social life and politics are based on a freedom of expression liberated from the monopolised communications. This monopolisation of information control characterised past ‘revolutions’ such as radio, telephony, cinema and television.

"It seems at the moment the internet is succeeding in escaping the controlling embrace of corporations or governments."

It seems at the moment the internet is succeeding in escaping the controlling embrace of corporations or governments. However, if it manages to achieve that it will be an historic first, argues Tim Wu. Already we can glimpse future battles coming in this space, with the Google vs. Apple open/closed debate (or fragmented/integrated as Steve Jobs would postulate).

The ‘master switch’ therefore, as I understand it, is the control of communicated information to the majority of people. An obvious example of a media master switch would be the BBC in the UK.

It is surely hard to argue though that information on the internet is not already controlled by a small group of businesses and organisations. From ISP’s (internet service providers) to search, social networking and micro-blogging organisations - we know who they are.

Yes, but surely with the social web people are in charge this time? Well, only if you stick to the terms and conditions of the site. It was recently reported1 that Facebook has removed some profiles for breach of T&amp,C’s without much prior explanation and Twitter also states in its terms2 that it can remove tweets or accounts without advance notice. And unless you have the type of website that can get onto the top third of page one of Google (very unlikely outside the big organisations) you are not going to reach many people.

The emphasis most new communication platforms have with big business, no matter how steeped in moral aspiration, is advertising and the sale of data - your data and mine.

Of course, those people working in a specific area of research who are highly connected and engaged with the social web may feel like this is a new dawn. It is true to surmise that, unlike other revolutions in communication, the social web does bring people together in easily formed groups. This, even in the context of centralised control, offers the possibility of dramatic change in communications.

"It is surely hard to argue though that information on the internet is not already controlled by a small group of businesses and organisations."

As has been said by many others before, social media is powerful because it is new leverage for old human behaviour and if you can change the way we communicate then you can change society.

So why is this important to health information? I believe completely that greater access to other people’s personal knowledge and experience can revolutionise how somebody lives with and seeks treatment for an illness. Even ten years ago if you were diagnosed with a condition such as multiple myeloma you would most likely have been able to meet only a handful of people in a similar situation to yourself.

I have heard my friend Dr Andrew Spong state a number of times that “doctors are experts in treating disease and patients are experts at living with them.” Being connected to what might seem like a small group of even 50 people from around the world facing the same challenges and decisions as you can be life changing. Social media offers this to people in a way that has never been found before.

People, as creatures of habit, naturally trust brands and services that are familiar to them. If people search in the UK they predominantly use Google and (I mentioned the top third of the first page principle earlier) they often don’t even scroll down - even when looking for information critical to their health. This is not just laziness, as the higher the result then the better the information, right?

When we look at the furnace of social communities it is obviously shared interest and experience. Interaction around serious topics such as health is mostly driven by information. When driven through vast but controlled platforms such as Twitter and Facebook this can form a situation referred to by media experts as the ‘echo chamber’. Although at worst this can reinforce incorrect and possibly dangerous information, at best it usually means that ‘readily’ available information is passed back and forth from the same sources.

"Unless we are able to provide high quality information to the right people through channels they actually use and trust we are irrelevant to the discussion."

My conclusion is that the challenge facing pharma is vast. This is not a manifesto for not having a social media/communities strategy as a pharmaceutical company. It is in fact the very opposite. Unless we are able to provide high quality information to the right people through channels they actually use and trust we are irrelevant to the discussion.

It is essential that we use the controlling forces of the internet to help people find the high quality information that we have about the disease areas we work in and the products we sell, especially when we think about patient safety.

Until we are honest about how and where the vast majority of people looking for health information and support on the web are going we will be powerless to affect such positive change.


1. Facebook accused of removing activists' pages, The Guardian, http://www.guardian.co.uk/technology/2011/apr/29/facebook-accused-removing-activists-pages

2. Twitter Terms of Service (May 2011) http://twitter.com/tos

**The views within this article are those of the author and do not necessarily represent those of Janssen**

Alex is back with his next piece in two weeks.

About the author:

Alex Butler is a global thought leader in health care social media for the pharmaceutical industry with the implementation of a number of innovative projects, including the UK’s first pharma twitter account and the world’s first Facebook disease community with open comments and post moderation. He is a regular speaker and writer for the pharmaceutical, marketing, communications and technology press. According to John Mack, Alex is the most followed pharmaceutical company employee on twitter in the world and was the inaugural recipient of the ‘Pharmaguy Global Social Media Pioneer’ award in 2010.

Alex currently works for Janssen as EMEA Marketing Communications Manager, part of the Johnson &amp, Johnson Strategic Marketing team.

Passionate about new marketing and advertising models Alex is an invited member of the Wharton University Future Of Advertising Global Advisory Board, based in Philadelphia.

Connect with Alex on twitter and also on LinkedIn

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15 August, 2011