Social Media and Patient Advocacy Groups

 

Recently I presented a workshop on Social Media to a global assortment of patient advocacy groups.

An incredibly enriching experience, 
I walked away feeling I had learned even more than I imparted.

And that for me was a good thing – I loved hearing the groups share their successes and how they search for opportunities where Social Media can enhance the support they can give to patients.

The most significant thing that struck me was their incredible sense of purpose

.

When you consider big companies, the goal is often ‘Just Do Social Media’, the sexy tactic waiting for a strategy.

These guys had an abundance of drive and clear goals, with Social Media a potential vehicle.

They were not interested in a Social Media project for the sake of it – it needed to be aligned with a greater purpose.

The group shared some incredible examples of their work, through committed individuals bound together as a team.

One such example was a change to one countries national policy in terms of reduction on medication copayment
.  Social Media clearly has the power to support such efforts.

It was interesting to hear some of the things that the group wanted from Social Media.

  • Enhancing their offline advocacy and public policy initiatives
  • Establishing more meaningful and enduring connections
 with patients and other important stakeholders
  • Planning the use of Social Media, to be able to respond quickly yet in the most appropriate manner
  • Helping patients to understand as much as possible about their condition

 and its management
  • Generally making sure they are using Social Media in the best possible way
'So what is Social Media?.... Er let me think about that for a while'



‘So what is Social Media?…. Er let me think about that for a while’

 

It was great to hear this feedback directly from those at the front line rather than the usual insipid market research presentations.

The use of Social Media varied widely amongst the groups, so there is clearly a big opportunity to magnify the impact of their campaigns by using Social Media.

Indeed many were new to Social Media, but others were particularly established, caring for vibrant and burgeoning online communities.   These communities offer mutual support and work towards a common purpose.

My biggest personal challenge was minding my language, not so much the expletives, rather speaking at the right pace, to a group of non-native English speakers.

I had to restrain myself from going into a 450 word per minute frenzy on this exciting topic and not peppering my vocabulary with technical and business jargon.  The feedback was I managed this, although it required some serious concentration.

So I learned that objective setting for the patient advocacy groups is not a priority, as they are pretty clear on this already.

Areas they may need further support on are:

  • Understanding the tools available to understand the broader digital landscape in their therapy area
  • Aligning ‘traditional’ advocacy and public policy initiatives with Digital and Social Media
  • How to measure success and understanding what Social Media has contributed.

To be fair these are my assumptions not their requests – with the above recommendations I am probably guilty of self-marketing as I would love to be involved in more of these events!

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4 thoughts on “Social Media and Patient Advocacy Groups

    1. Hi Gregory, a bit limited in what I can say unf but 1 therapy area, global groups & took place in central Europe. Hope to get involved in more where I can really dive into the detail on this blog, with case studies and individual examples. Thanks for the feedback and question though….

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  1. I’ve been following your blog Gaz, sounds like you know your stuff. I’m just a newbie in the world of social media but can see the implications to corporations and the potential good having an interactive service can have to patients. Keep up the good work old boy, we’ll catch up soon.

    Like

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