As I type, most of the attendees of e-Patient Connections will be asleep, apart perhaps from the jet-lagged Europeans, who will be wide awake at 2.30am.

I followed the #epatcon hashtag yesterday rather more assiduously than I had intended to subsequent to my reading about Johnson & Johnson’s solicitation of user-generated content for its YouTube channel for money.

On the basis that this policy was clearly stated on the official Johnson and Johnson blog JNJ BTW over five months ago (‘Calling Mommy Vloggers’, 20 May 2009), you could hardly call this a revelation. I missed this announcement at the time, and it didn’t seem to make waves among attending delegates, although it caught the eye of some remote followers.

So, what’s my problem?

Firstly, I have an innate resistance to the idea that opinions that have been purchased are worth listening to.

Secondly, I dislike the ‘marketing creep’ that activities of this sort are symptomatic of.

Thirdly, I fail to see how campaigns such as this serve to advance pharma’s reputation within social media spaces.

Johnson and Johnson requested content from its viewership for money, and content was forthcoming. This is a transactional rather than a relational interaction which at best you might describe as a relational construct. Yet what has been constructed, here? JNJ BTW’s tag line is ‘our people and perspectives’, and everyone who has contributed to this project for cash merits the possessive sense that the phrase connotes.

Is this what social media are for? To take simple opportunities to share, engage, and learn, and monetize them?

This may explain why advertisers and marketers are so keen to help commercial interests find ways of draping existing business practices over new media environments. Outside of the healthcare arena, this diminution of the progressive potential that inheres within social media does not bother me especially. That is not to say that I like it, rather that I am not surprised by it in view of how deeply immured and desensitized we are collectively to the vagaries of the dominant economic arrangements we endure.

However, within the contexts of discussions concerning healthcare focusing upon the patient (and which conversations about healthcare should not focus first and foremost on the patient), I require more rigorous strictures when it comes to defining the terms of the debate.

As I ask in a video accompanying this post, when pharma treats the people it serves in this manner, whose needs are being putting first?

Update: I created a Twtpoll to go along with this post (‘Should pharma solicit user-generated content to publish via its social media presences for cash?’) which you can find here

The first 10 weeks of Health Care Social Media Europe’s (#hcsmeu)  existence has been characterised not only by our listening, learning, linking and frenetic debate, but also by our constant reference to  three themes that we seem to return to regardless of the discussion in  hand.

The #hcsmeu community has been consistent in its strident calls for engagement, transparency, and access in health care, and has frequently turned its unwavering gaze on the impediments to action it perceives. In recognition of this, as co-founders of a movement that we are proud to be a part of, Silja Chouquet and myself are today proposing that the time has come to begin to transform #hcsmeu’s formative activities into normative ones.

To that end, we invite you, the reader, the existing members of the community, and everyone, everywhere who wishes to join us in the proactive pursuit of our aims, to consider the following draft of our mission statement and append your name to it.

Click on the image below to view the statement on SlideShare. Please add your comments (Insert > Comment or Ctrl + M) to the Google docs version of the text here and add your name to the list of signatories here.

Please join us in our mission to drive forward social media adoption in health care in Europe.

There has been a considerable amount of discussion this week in the health care blog world regarding Google sidewiki, a new addition to the Google Toolbar allowing a user to ‘contribute helpful information to any web page’.

Phil Baumann, Steve Woodruff, John Mack and ePharma Rx have posted thoughtful contributions, whilst the #hcsmeu, #hcsm and #hcmktg communities have all alighted upon the question. Debate has polarized between those who think the issue is irrelevant until such time as sidewiki has a substantial user base (‘if no-one is watching, nothing is happening’), and those who consider that a breach has been made in the pharma marketing dam (‘regardless of who is watching, something is happening’).

For the record: I side with the latter position.

Google sidewiki posts will only be visible to those who also have the tool installed and active in their browser. Individuals can edit, delete or share their own posts, but apart from flagging entries as not being useful, nothing can be done by the owners of the website in question to mediate the comment that has been left other than respond to it.

This, of course, is the issue for pharma: will any given company want, or be able, to engage in debate regarding ‘helpful information’ added to its yourdrugnamehere.com websites when it may consider the information submitted as being far from ‘helpful’ with regards to its own marketing strategies.

What if the information (which could, of course, include a patient reporting an adverse event) receives a lot of ‘Useful?’ approvals? (see below).

John Mack has forced the issue by leaving sidewiki posts on the US Viagra and Alli sites to see what response, if any, is forthcoming from Pfizer and GSK:

At the time of posting, John’s Viagra post had received nine positive votes and one negative vote. This is something of a test case, of course, as the health care social media community is currently interested in, and aware of, this topic.

Nevertheless, these interventions have moved the debate from the theoretical to the factual.

Google sidewiki comments now exist on these sites (sidewiki users may wish to check out Alli’s UK site too; click ‘next’ in the bottom right hand corner)

Predictably, pharma is nowhere to be seen. All of the blog posts listed above (but especially Phil Baumann’s) make some valuable suggestions as to how pharma should deport itself. In essence, these can be distilled into one word strategy:

Engage.

At the heart of this conflagration is the industry’s reputation as being controlling, remote, and faceless, which it presently richly deserves.

However, over the last twelve months I have both interacted online and met face-to-face with scores of pharma employees who have overturned many of my own preconceptions about the industry being peopled solely by soulless corporate drones obeying the will of their paymasters and overlords. That’s not to say that there may not be legions of the latter in the sallying ranks of the pharma army, but that’s not my concern.

Rather, I’d like to see the principled, engaged individuals that these companies are lucky enough to have on their payrolls do what they want to do, namely begin to transition their marketing strategies from the transactional to the relational mode using social media.

With Google sidewiki allowing annotation downs to tweet level, right now is an ideal time for pharma to begin to engage. This tool may or may not set a fire under web users’ imaginations, but the next innovation may.

Pharma needs to prepare for an historical inevitability: the appearance of unmediated, non-approvable, unblockable user comments on their websites.

How?

See above.

Whether there is an official arbiter to offer a final pronouncement, or whether there isn’t, one things appears to be true: conference hashtags confuse everybody.

As I will be taking a professional interest in the European Association for the Study of Diabetes‘ meeting in Vienna later this month, I thought I would make some preparations. You know, create a Twibbon for EASD attendees, follow the official EASD Twitter account, and so on.

That’s where the trouble began, of course, for as the unsuccessful quest portrayed above courtesy of the fantastic screenr (whose services you may find useful, and who are worth a follow on Twitter themselves) shows, the EASD does not have a Twitter account. The EASD has over 6,400 members. I have a sneaking suspicion that seeing as many of them take the trouble to trek to wherever the annual scientific meeting is being held, there’s more than an outside chance that they may like to talk to each other for more than 4 days a year.

As PharmaGossip was kind enough to point out, the EASD’s Executive Council (along with innumerable other societies) could do worse than thinking about enlisting someone’s services (ahem ) to help them out.

So, where does the status-updating EASD delegate turn in order to figure out what the conference hashtag is going to be? I’d proposed #EASD09, but as Sally Church pointed out, there are those delegates that find adding a year to a hashtag onerous and irritating, not to mention redundant on the basis that hashtags do not currently have a long enough shelf life to mean that next year’s posts need to be distinguished from the current year’s.

I thought I’d poll opinion to see if there was a general consensus either way. Intriguingly, with 36 votes cast at the time of writing, there’s nothing of the sort.

So, where do we go with this? One thing’s for sure (apart from Phil Baumann having gone all hashtag stir-crazy): #ECCO15ESMO34 has to be the worst. Hashtag. Ever.

AstraZeneca’s Arimidex-branded Celebration Chain offers friends and family the opportunity to ‘honour special women in [their] lives who have overcome or are fighting breast cancer, and to celebrate their unique, endearing qualities’.

Users begin by creating a ‘Celebration Doll’:

Next, they personalize the skin tone, hair, and outfit of their doll:

Finally, they select up to 4 ‘celebration options’ and an accompanying soundtrack:

Users can then email an invitation to the recipient to view a Flash animation of their ‘Celebration Doll’ engaged in their ‘celebration options’. Subsequent supporters can send the individual represented by the doll virtual hugs with personalized messages.

This low-grade patient support vehicle is a similar concept to that utilized by the Novartis Oncology CML earth site, but (in my opinion) nowhere near as effective. To date, the site proclaims the fact that ‘18,640 women have [received] 31,616 celebrations from their family and friends,’ but I’m struggling to see why they’d bother.

Perhaps the first point to make is that the site is aimed at relatives and acquaintances of those who have experienced or currently have breast cancer, not the individuals themselves. The creators doubtless see their invitations as a gesture of solidarity to show that the person in question is in their thoughts.

That’s all good.

What is less good is the fact this site in no way captures the diversity of experience that each breast cancer patient passes through that affects not only them, but also everyone whose lives they touch. Theirs is a spectrum of experience that may engender inspiration, hope, strength, but may also encounter dejection, despair and frailty. The latter should not be shied away from, and the site’s relentlessly upbeat tone (even its name) denies them the right to acknowledge the totality of their experience. None of the latter are conditions unique to the breast cancer patient: they are part of the wider human condition, and for all of us at some point, the unfortunate but inevitable corollary to the difficult business of being alive.

Far from celebrating a breast cancer patient’s individuality, Celebration Chain robs them of it.

How?

Everything about this initiative positively screams “CORPORATE-BLAND” at me, from the teeth-grindingly awful music that pollutes the site, to the conservative outfits users are forced to clothe their dolls in, to the prim-and-proper hairstyles (scarf excluded), and the dull, dull soundtrack and celebration options. And by the way: men get breast cancer, too.

Know a 20-something Emo type with piercings, a fashionable crop, very particular taste in their clothes, music, and pastimes, and breast cancer? They’re not going to appreciate your sending them this Stepford Wives-styled ‘celebration doll’, unless they have a particularly refined sense of the ironic. They may also raise an eyebrow at the fact that AstraZeneca is offering to donate ‘$1, up to a total of $25,000, to a breast cancer charity’ for every doll created in light of the fact that Arimidex generated revenues of $1,857M (+3% against prior year) in 2008.

This is old pharma thinking in a (barely) new media setting, as coldly mechanistic and inhuman as the eerie, faceless celebration dolls themselves.

A better solution for any pharma company wanting to engage with the breast cancer community (or indeed any patient community) would be: create a sponsored community space where those with breast cancer can make connections, share experiences, support one another, celebrate their individuality, but also feel included as part of a bigger community.

There are as many stories to be told about breast cancer as there are people with breast cancer.

Let them be people. Don’t make them be patients.

Time flies, and it is scarcely believable that there are now only two more weeks until the inaugural #hcsmeu live tweetup, to be held on this occasion in London on September 25th.

Firstly, I need to point out that I am going to be testing the social media maxim ‘it’s not about you’ to its limit by not attending this event in person due to a commitment I am unable to reschedule. #hcsmeu co-founder Silja Chouquet will therefore be flying solo as your host, and I very much hope that she can count upon your collective support.

After two months of frenetic online interaction during the weekly events, it will be great to have the opportunity for you to meet face-to-face. Many of you have already unofficially confirmed with us that you will be attending, but in the interests of our desire to be as inclusive as we can at all times, we thought we should make a more official announcement, namely:

We cordially invite you to join the inaugural #hcsmeu live tweetup in London on 25th September. The event will be held at the offices of healthUnlocked, who have generously offered us the use of a meeting room for the event, for which we are most grateful. Their address is:

The tweetup will take place as usual, noon UK time, 1pm CET. If you plan to attend, please sign up here in order that we may make the necessary arrangements.

We would like to make this first tweetup not only an occasion for #hcsmeu participants living in or near London to meet, but also for the entire #hcsmeu community across Europe. How?

We intend to stream video interviews with real-world attendees in London in order that other #hcsmeu-ers on Twitter can watch live and participate in a simultaneous real-time discussion with physical and virtual attendees using Twitcam. Please find below an example of a Twitcam video here.

We will keep our current format of three topics, but on this occasion we will be inviting three of you attending in person (or even better, three teams of attendees) to chair a topic and broadcast your answers via Twitcam.

If you are interested in participating, please enter your topic (as well as the identity of your nominated sparring partner(s)) when you sign up for the event. Please note, it is a pre-requisite for participation that you be physically present at the tweetup and be able to arrive twenty minutes beforehand in order that Silja can set you up and talk you through the process.

After all the fun, we would like to maximize the opportunities for you to socialize, meet, greet and chat over lunch afterwards at a gastropub about 5 minutes walk from the tweetup location:

Finally: Silja and I would appreciate your help in getting the word out about this first tweetup as we finalize arrangements. For our part, the idea is not only for us to meet one another, but also to spread the word about #hcsemeu and build our community. Whilst we are delighted to be able to offer existing European healthcare twitterers the chance to meet face-to-face, it is equally important to us to continue to reach out to future colleagues working in healthcare who are not yet aware of #hcsmeu and the ability of Twitter to facilitate interaction, and who may like to join us. It is our hope that this inaugural live tweetup will be a wonderful training tool for us to all to use and recirculate in support of #hcsmeu recruitment.

We are also hoping that it will encourage commercial sponsors to support us in our aspirations to bring regular live #hcsmeu events to Basel, Berlin, Madrid, Rome, and a European city near you.

Silja can’t wait to meet you, and I can’t wait to see how thing turn out!