Dec 152013
 
Image courtesy of Leeds Data Thing

Image courtesy of Leeds Data Thing

Do social networking spaces afford opportunities for people accessing health and social care services, citizens and public sector organisations to have conversations about important topics that affect all of us?

This was the question we tested out in #AboutMeLeeds which took place during the Leeds Digital Festival and which was supported by local NHS organisations and the council, NHS Employers, NHS Confederation and NHS England. We partnered with Leeds Data Thing to experiment with a social conversation which we hoped might help shape the use of data in our city. You can find out a bit more about what we hoped to achieve here.

Leeds Data Thing have posted the results of #AboutMeLeeds with some intriguing insights, such as the fact that most people want access to their health records, but comparatively few have ever done so, and that many have concerns about security of their data.

Whilst the results are valuable – I am equally interested in how #AboutMeLeeds worked as a social conversation and the extent to which it proved an effective means of involving citizens in Leeds.

What we found is that we have a strongly connected and active health and social care community in Leeds (people accessing and working in services) on blogging platforms and on Twitter. We enjoy talking to each other. A lot! But it also showed that when it came to #AboutMeLeeds, we didn’t permeate out much beyond ourselves to other networks. The citizens of Leeds pretty much let us get on with our chat and got on with other things.

Now this gives us some invaluable lessons that we can apply to future conversations and below are key reflections I have drawn from the experience:

  • Make it personal – find a way in to a topic that makes it personally relevant to people and captures their attention. It is pretty hard (if not impossible) to recreate Twitter flashpoints such as the Asda Halloween costume that I have reflected on in a previous post. But making it personal rather than institutional is key. Prime interest groups beforehand and secure their support to set off the conversation on their own terms and in their own ways.
  • Tell stories – build the conversation through stories that people can personally relate to, find interesting, and want to share with others. Stories are better told peer-to-peer by people with a personal connection to the topic, rather than representatives of institutions, and are likely to have more virality.
  •  Mix online and offline – mix online and offline activity to boost the conversation and spread out events/activities to generate new interest and spread engagement. The Leeds Data Thing event which took place during #AboutMeLeeds gave a new lease of life to discussion and got new people involved who had their own networks to connect with.

If you have any other insights and/or suggestions for future social conversations I’d love to hear from you. I’d like to thank all the people who blogged for #AboutMeLeeds and participated in the conversation; and here’s to the next one with added oomph from lessons learned this time around :-)

Oct 212013
 

Recently Tim Kelsey, NHS England’s National Director for Patients and Information, blogged  about his aspirations for a new citizens’ assembly – he wants it to be the next step in putting ‘patient participation at the heart of its [NHS] decision making’.

Whatever!

I confess my first reaction to reading the post was ‘yeah whatever’ [you can tell I have teenagers] I have heard such platitudes so many times before – words like ‘empowerment’ and ‘participation’ trip nicely off the tongue, but how often to we involve citizens really well in the NHS and how routinely do we quantify what difference their involvement has made.

It can be too easy to focus on the process at expense of the outcome; involve people too late or half-heartedly; get tied up in professional structures, management hierarchies and just sheer workload with reduced resources, all of which can work against us involving people really well.

But whilst I can feel jaded about the context, I can’t help but feel moved by Tim Kelsey’s intent. I know that when I’ve had the opportunity to involve people using services really well (be it from recruiting new staff to setting up new projects and services) it has been a nourishing and rewarding experience and we’ve achieved something more than we could have done on our own.

Rocket fuel

So what will make Tim Kelsey’s words really count for something?  I wonder if part of the answer may lie in the confluence of his two areas of responsibility – technology and participation.

I have previously blogged about how I believe social media affords the flattening of hierarchies, a directness of address, a fluidity of conversation that builds and develops over time, not to mention a transparency not easily achieved through a completed survey or written letter. Can digital play a part?

Tim Kelsey talks about the role of digital in his post ‘This will need a transparent and open process which is one of the reasons why the event is going to be live streamed and why we will be including comments and ideas from our digital participants as well as the people in the room – in the 21st Century we are going to need to be ‘digital by default’ at the same time as making sure everyone has the chance to participate and contribute.’

The challenge and opportunity we have is to use the principles of social networking (not just the platforms) to accelerate participation. But we have a way to go. At the moment most of us in the NHS are largely broadcasting on social media platforms. We need to build both the culture and practice of social networking into our conversations and we need to have the right tools to monitor and measure. #AboutMeLeeds is one experiment aiming at moving digital participation forward in Leeds and we’ll be learning from the experience to improve online participation in the future.

Tim Kelsey’s metaphor of participation as a ‘living system’ is one that appeals to me and the principles of social networking might just be a means to make some progress.  You can find out more about the citizens’ assembly event on 22 and 23 October to develop the citizen’s assembly here and you can contribute to the conversation on Twitter using the hashtag #NHScitizen.

Oct 082013
 

It strikes me as a little foolhardy to write a blog post on a topic I know precious little about and on one to which I have given very little thought. But on this occasion that’s sort of the point…

A couple of weeks ago if you’d attempted to have a conversation with me about data privacy you’d have been pretty disappointed – I confess I had not give it a great deal thought; that was until we decided to do an experiment in online citizen participation during the Leeds Digital Festival, and this emerged as topic about which health and social care organisations really want to have a conversation with the citizens of Leeds.

Ok… so health and social care organisations are interested; but the nagging question in the back of my mind was (and is) would the citizens of Leeds be the slightest bit interested? Doesn’t  the argument tend to go ‘if you’ve got nothing to hide then why would you care who knows what about you anyway?’

But the more I’ve pondered, the more I realise that I am quite bothered. I’m bothered about the fact that Facebook use my age and gender data (willingly supplied by me of course) to allow marketers to pop wrinkle cream and diet product ads on my timeline. I’m bothered that a hospital might not properly treat my son’s impressively extreme and rare allergy properly if they can’t access his GP data. I’m bothered that I regularly get convincing illegal texts and emails trying to elicit my bank details. I’m also a little bit bothered (when I give it serious thought) that I routinely provide quite a bit of personal data about myself in all sorts of social media spaces without any real appreciation of how it could be used for any number of nefarious purposes. And I’m similarly intrigued by how much data other people are willing to share about themselves online.

#AboutMeLeeds is a conversation about data privacy taking place  in social media spaces from 21-27 October and I’m hoping that, as a citizen of Leeds, I get to learn a whole lot more about data and privacy as well as making a contribution to how it is handled in our city.

To read a more informed view about data and a bit more about #AboutMeLeeds check out this post from @LeedsDataThing here and there is an interesting article from The Guardian about data and privacy that you can read here.

If you’d like to blog about data privacy during the Digital Festival then please do get in touch.