When moderating your comments on pharma sites is a good idea

We all like to show support on the social web for initiatives that we feel merit recognition.

It’s social.

It’s what we do.

The indirect promotion of our activities through the amplifying effect peer approval confers is usually both welcome, and appreciated.

It’s now also something we may need to think about twice about before we do it.

This morning I’ve been wondering whether Alex Butler, the architect of Janssen’s new Psoriasis 360 Facebook page (also on Twitter and YouTube, according to the twitback, but I can’t see it yet), hasn’t actually been grinding his teeth whilst penning many gracious replies to messages of support from healthcare social media commentators and enthusiasts.


Because every comment that Psoriasis360 garners from those who do not have psoriasis may dissuade those that do have psoriasis from participating.

I completely understand why Alexandra Benbo (comment, 8 October 2010), whom I’m inferring from her comment may have, or have had, or been in some way affected by psoriasis in others, was bemused by what she encoutered on visiting the page for the first time:

Imagining myself seeing Psoriasis360 through her eyes, I would have been rocked back on visiting a page focusing on psoriasis and not unreasonanly expecting to see comments from other people with psoriasis, only to be treated to a ticker-tape parade of grandstanding comments-about-commenting from social health freaks and geeks.* I’d have turned tail, and headed for the hills, never to return.

More recent commentators such as Siobhan Rossi (comment, 11 October) don’t seem to have been quite as phased by this, but nevertheless, Alexandra’s point is taken.

In Alexandra’s words, whilst I am very much ‘for’ it, ‘this community isn’t for [me]’.

This has made me reflect on the fact that in wishing to express our support for our healthcare social media communities, we may be stymieing their aim of supporting patient communities, the very thing that we are so keen to promote.

As first commenter*, I’m right at the front of the line for the #headslap and will in the future consdiering moderating my own desire to comment. That includes quashing the desire to post a link to this post on Psoriasis 360. 😉

Will you be doing the same?

Thanks to Pfizer’s Andrew Widger for bringing this to the attention of myself and Dominic Tyer

31 thoughts on “When moderating your comments on pharma sites is a good idea

  1. Funny!
    I think it does also highlight the slight annoyance that existing health communities (that have grown up spontaneously) feel when having an official looking forum created seemingly overnight by a large company, with the description ‘community’ – we all know communities have to be nurtured, they don’t suddenly appear overnight – and ideally they are grown and nurtured by their own kind (ie. the patients).
    The description also says that the forum is ‘supported by’ Janssen, but from what I understand, it is not only supported but also run by Janssen is it not? If so I find the ‘supported by’ description rather misleading.
    I am all in favour of Pharma engaging with patients, but I think I would prefer to see pharma support existing patient communities, rather than try to make their own, or be very upfront that any forum they create is their own (not ‘supported by’).

    • Hi Frankie

      Thanks for having taken the time to leave a comment.

      You raise an interesting point regarding the meaning of ‘community’ and ‘support’ in these contexts. I’d preface my reply by saying there is usually more than one community in any and every category you’d care to look at (‘splitters!’ 😉 ) but I think it perfectly acceptable shorthand to refer to the ‘psoriasis community on Facebook’.

      In the sense that the community existed prior to Psoriasis360’s creation, Janssen is indeed supporting it. However, I’d probably view this as its secondary rather than primary meaning, and to that end ‘created by’ may be more appropriate than ‘supported by’ in this context.

      • Hi Andrew,

        I like the concept that Psoriasis360 is supporting the already existing psoriasis community on Facebook. I wonder if they entered into a dialogue with the community and got their support before creating their forum? It is the description on their forum that I was picking apart:

        ‘Psoriasis 360, supported by Janssen, exists to dispel myths about psoriasis and provide useful information to patients, family and friends. We really value the opinions of people who join the community.’

        Maybe a better approach would be to say :

        ‘Psoriasis 360, created by Janssen, exists to dispel myths about psoriasis and provide useful information to patients, family and friends. We value the opinions of the existing psoriasis community on Facebook and have set up this forum to support this community’.

        Just a thought.

    • Dear Frankie Dolan.

      I came across Psoriasis 360 in Facebook and searched for it on google, found this blog and therefore found you.

      I have psoriasis and have no connection with pharma in any way. I don’t know anything about it really.

      Your post made me angry. All of these ‘communities’ for which you pretend to speak who are annoyed by Psoriasis 360 should concentrate on what they do, if of course they are annoyed which I doubt.

      I have been on dozens of sites and facebook pages for psoriasis, all are either selling something unlikely to help or are a great place for people to talk about their current and past treatment.

      What they often don’t have is information and things that help you get to grips with the actual DISEASE.

      Why should pharma support these sites? I don’t care who provides the info as long as it is good, this page is.

      Mr Richman, how wrong you are. I have found out that I am severe and will go back to my doctor. On the page someone alse said the same thing.Your site seems to suggest you sell expertise on digital (whatevr that is), maybe you are not an expert on health, certainly not on psoriasis.

  2. Hello Andrew,
    So right you are, this was exactly the thought I was having when preparing my diagram for the preso for Selling Sickness, the one where it says: the care process is private to the patient, not to be intervened when not solicited for. It is really basic for the transition from web2.0 to web3.0 that I envision as a private platform foremost to patients! The is basic to Experience Co-Creation in Care.
    So I’m more than happy to second your point!
    (refer to http://ht.ly/2S3Po and http://bit.ly/dDi840 )
    Rob @rohal

    • Hi Rob

      Thanks, as always, for your comment.

      I don’t think that, collectively, we’ve given enough thought to the many facets of this issue. We don’t want to be the ’embarassing dads dancing’ or ‘tearful mums waving hankies outside the school on the first day’.

      Basically: we’re not welcome, and we need to get used to the idea.

      And that’s fine.

      We’re not going to put out bunting and wave flags every time pharma gets something off the ground, and it’s time to start asking ‘wha’t’s next?’ before the healthcare social media community’s contribution to progress turns into a succession of endless reruns of ‘Groundhog Day’.*

      If something feels like it might be getting too comfortable, it already is.

      It’s time to move on. Where are we heading?

      *I situate all these comments within the context that the ‘old hands’ should always bear in mind their responsibility to new entrants as ‘meeters & greeters’ and sign-posters, but if that’s all they do, they become curators of a museum.

  3. Great commentary, liked it a lot. May I just clarify from your view are you suggesting that SM “professionals” comment via Twitter etc but refrain from commenting directly on patient pages as in Psoriasis360 therefore leaving it for the actual patients?

    • Hi Carl

      Thanks for stopping by 🙂

      Yes, that’s precisely what I’m suggesting.

      I will extend the same laurel wreaths and plaudits by DM – which seems counter-intutitive to our open social natures, but I can see the need here – but think twice about commenting on other pharma and provider sites.

      Two further comments:

      1) This is not a self-imposed blanket proscription, it’s a suggestion that we add another ‘yes/no?’ step to the decision tree of comment making logic. There are any number of good reasons why one may want to comment that I can think of.

      2) If we do choose to make this change tacitly – and that’s one thing the self-aggrandizing social media maniac in us will need to accept, namely: no-one will know (heaven forbid we start seeing tweets along the lines ‘I decided not to comment on [site x] “For The Good of the Patient”‘), then we do so neither to ration praise nor starve new initiatives of publicity we may nevertheless think they deserve.

      Rather, through our electing not to participate through our withholding of a comment, we will be playing our small part in helping the creator achieve their primary objective: supporting the patient.

      I think that a scant sacrifice to have to endure, all things considered.

    • Hi Neil

      Thanks for that.

      Reviewing the comments this morning as I did, I noticed you were already one step ahead of us at the time – as usual 😉 – in your having made a comment for the attention of the psoriasis community, rather than the site’s observers.

      Nicely done.

  4. Great post, Andrew and one I was going to write, so thanks for saving me the time (http://twitter.com/#!/jonmrich/status/26762410856).

    While I’m glad that Janssen has gotten this out there and I’m generally a fan of their work, I’m left a little lacking on this one. It is early though, so I’m sure more to come, but for now, I’m left wondering if this isn’t just another “if we build it, they will come” approach that never works.

    I’ve said it many (many, many) times before, why would someone want to join a “community” that is controlled by a pharma company when they can join one controlled by a neutral, 3rd party? There actually are only 2 cases where they would:

    1. No third party community currently exists or they are very small with few members. This is pretty rare now, as nearly every condition is supported by a robust community somewhere.
    2. The pharma community offers tools that don’t exist elsewhere. Perhaps a unique tracking tool or one on one consultations with actual doctors (imagine that)

    So, with all due respect to my friends at Janssen, I’m not seeing Psoriasis 360 meeting either of these. There are very robust 3rd party sites out there already for psoriasis that are very active. The more members, the more valuable the community is to each individual (see Metcalfe’s Law) and the community (including the Facebook page) doesn’t offer anything unique that doesn’t already exist. Because of this, they will struggle mightily to build up any significant number of members.

    And one more thing…who wants to broadcast to all their friends on Facebook that they have psoriasis? When you factor all of this together, it’s no wonder that only industry pundits are the ones commenting and not real patients.

    A step in the right direction, but what’s next? I’m looking forward to seeing it.

    Dose of Digital

    • Hi Jon

      Having discovered my pre-emption of your post, I feel my IQ must have mysteriously shot up overnight. It’ll be in 3 figures soon, I reckon.

      Metcalfe’s Law not withstanding, I’m of the opinion that the value added by any new proposition is directly proportional to the quality of the content provided.

      Sure, there may be any number of communities around any given condition, but are they providing reliable, relevant, high quality, f outcomes-oriented health information for patients? If that niche is filled, fine, but sadly more often than not that role is wide open.

      I’m not saying that this is Psoriasis360’s angle, and I have a good deal of sympathy with your observations, but I question whether it is now always-already too late for pharma to intervene meaningfully in supporting communities.

      That said, I’d favour seeing unbranded, non-promotional, info/convo-only pharma presences intervening proactively within existing communities rather than run the risk of being labelled as the constructors of further monuments to the great god Bilditan Thailcome

    • Can I suggest that it is far to early to suggest that there isn’t a need in the UK for a resource like this – let’s wait and see. We are in the learning phase and I think it is important to (when people are trying new approaches) to not already suggest that there isn’t a need. Time will tell.

    • I don’t see information and community in the same way as you. No community owns somebody. I can info from whee I like thank you very much.

      “who wants to broadcast to all their friends on Facebook that they have psoriasis?”

      That comment may explain why the more places that exist to help people understand more about a condition like psoriasis the better-you should have a look at some of the info yourself.

      I like the 360 site. Like other people who may choose to get involved they could not care less about your analysis. I thought the idea was that if you don’t like something on Facebook you won’t use It. My son has psoriasis and I can tell you there is very little high quality info.

      • Hi John

        Thanks for taking the time to leave a comment.

        I agree with your whole-heartedly on two points: firstly, who cares about analysis of health information resources other than media professionals, be it mine – which you are fully entitled to single out for summary dismissal 😉 – or anyone else’s, and secondly, there is less high quality health information available for patients of each and every medical condition out there than there could be. See my comment above.

        I hope you’ll drop by again and/or connect on Twitter, and nice to meet you.


      • Andrew, my comments were for Mr Jonathan Richman. Your comments make a great deal of sense to me, his do not. He obviously has his finger on the pulse, unfortunately of Frankenstein’s monster. Thanks again.

      • Johin,

        I don’t think I said anything about any community owning anyone. Yes, you can get info from wherever you like. That’s what is so great about the Internet. I’m with you. My point was that someone who is looking for a community to join is likely going to join one that’s already really active and has useful information and people who know what they are talking about. P360 isn’t this now. Maybe it will be in the future, but it’s going to be very tough.

        Regarding the Facebook broadcast issue, I say this based on a lot of research we’ve done (and other research out there) about what people are publicly sharing on Facebook. Certain conditions appear to be almost taboo. Psoriasis is one of them. Should it be? No, but that’s just what is happening. Not saying it’s right or fair, but a simple statement of fact.

        I hope you find the resources that help you and your son. If P360 delivers this, that’s great. If not, I hope something else does. I wish you the best either way.

  5. Great post Andrew.

    This an interesting discussion to have and we do have to beware of self congratulatory discussion on the social media platforms we produce.

    From my perspective I understood and appreciated the comments that people made on the Facebook page. Healthcare is a complex environment and everyone with an interest deserves to have a voice and the chance to comment.

    The people who did comment are people I personally respect.

    The comment posted was perfect because in one swoop she encapsulated what this is all about. I was delighted she wanted it to be about people with psoriasis and a community and source of information.

    Interestingly people have already come back and disagreed with her to some extent. It is the kind of debate we need and very exciting to be involved with.

    With an open commenting policy we will hopefully get genuine discussion and debate,

    Social media moves fast and what may be an interesting observation today may be out of date tomorrow. I want to see this grow organically and can’t wait to hear the interesting insights people have.

    Best Regards,

    Alex Butler

    • Hi Alex

      As the creator and current curator of Psoriasis360, it’s great to get your perspective on this.

      That’s certainly another angle. If we have something of value to contribute we should do so, and just get over ourselves. 😀

      However, I still think I’m going to be keeping my powder dry a little more often in the future on the strength of this observation and the discussion it has provoked.

    • Alex,
      Whilst I received a reply to my comment asking if any info was tracked or stored from the Psoriasis 360 website I was disappointed that no reply was given to:
      “Although you are clear about how you will manage comments you give no indication to those using the site that their comments are public. Perhaps you think that is obvious but I would like to see some guidance.”
      And I can still see no mention of the public nature of this discourse. Yes, everyone who is participating may be very happy to share publicly but I think you should at least acknowledge this.
      PS http://wishfulthinkinginmedicaleducation.blogspot.com/2010/08/paying-for-privacy-patient.html
      My post on this.

  6. I think because we who work in or allied to pharma still feel we are ‘new’ to social media we are fuelling our own desire to be ‘out there’ being seen, and being seen to comment. The very fact that social media allows us to do this visibly and we are marketers or communicators means we jump on the latest initiative that comes along and feel we ought to comment or have a right to comment.

    My own opinion fwiw is that for patient directed initiatives, we in the industry should be gently observing and learning, but letting the audience who would benefit most from the initiative develop their own community without thinking that they are being watched and commented on. There are other forums (hcsm / hcsmeu) where we as creators and commentators can discuss our thoughts without impacting the natural growth of a patient resource.

    Talking as a patient, it would make me cynical about the validity of the information I sought online if marketing and PR commentators were involved. It would de-value the information. And that’s coming from a PR!

    I ‘like’ Psoriasis 360 because it can bring a range of sources of information to patients. A range and depth that they wouldn’t have had access to pre-internet and especially pre-social media. I won’t however, be announcing on Facebook that I ‘like’ the group for two reasons: 1) Facebook is ‘friend and family me’ not ‘work me’ and 2) I don’t have psoriasis.

    • I should just state that my cynicism is not directed towards pharma exclusively!

      If I was finding information on cakes (as a random example) and had to sift through lots of comments from other cake makers or from PRs working for other cake makers when I felt the page had been set up for me as a cake connoiseur I’d feel the same reticence toward the information provided and of being active within the group.

      • Hi Anna

        No cynicism either observed or inferred on your part.

        Your thoughtful response is borne out by your actions, and I salute you for them.

        I’m afraid that I am a leaper who appears congenitally indisposed to being a looker.

        Were we ancient warriors (not quite sure where this bellicose metaphor is coming from, but whatever) I’d be the blue-painted barbarian hurtling down the hill bawling my head off, you’d be the legionary cooly waiting for me to impale myself on your pilum. 😀

  7. Hi Andrew

    A timely and thought-provoking piece. I tweeted a brief (of course) response to Andrew Widger’s question that kicked this debate off, but can’t resist adding to it.

    As you say, that community isn’t really meant for us (as commentators/observers) – so for me it felt a little out of place to be quite so ‘industry’ on a health resource for the public.

    But – being used to the flurry of pharma information and views on Twitter – I can quite see why it would have felt natural to have that kind of conversation on Facebook, particularly as it’s a pharma FB page that actually allows comments (!!).

    Having reported on Psoriasis 360, what it’s trying to do and where it fits into the pharma landscape, I’d feel more comfortable talking about it at, say, #hcsmeu than on FB.

    In any case, the conversation on the FB page already looks to have swung back round to its rightful, patient-centred axis.


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  9. Blimey Mr Spong, what a healthy debate this has created.

    Some great points here, and I really appreciate all the views expressed. Now can you see what I was musing over when I first tweeted about this?


    • Hi Andy

      Yes, you lit the blue touch-paper, and retired! Thanks for returning to see the conflagration it caused. 😀

      The discussion certainly changed my perspective on the issue of commenting on patients sites. Good job on bringing this to everyone’s attention.


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