by Victoria | Oct 28, 2013 | mental health, PhD, social media |
In my research interviews the notion of feeling connected, and finding ‘my tribe’ has been a common theme. I’m very grateful to Trish Hurtubise, founder and co-editor of the web site Mental Health Talk, for sharing her experiences of social media in this guest post. A tribe is a group of people connected to one another, connected to a leader, and connected to an idea. For millions of years, human beings have been part of one tribe or another. A group needs only two things to be a tribe: a shared interest and a way to communicate Tribes: We Need You to Lead Us (Seth Godin) I didn’t talk about my experience with psychosis. It was the one part of my mental health history I judged so harshly I projected my stigma onto others. When I came to realize this, I did what anyone would do in my position and started a blog. I wanted to ‘come out’ about psychosis to the blogsphere. The myth about starting a blog debunked I added my account on WordPress and published a few posts. Then I waited. And I waited some more. I was perplexed. I truly believed if you started a blog, people would find you and comment. ‘If you build it, they will come’ rung in my head. Then I learned you actually have to let people know you’re blogging whether it is by word of mouth, optimizing for search engines, guest blogging, becoming part of the madosphere communities, promoting via social media – or all of the above. I didn’t revamp my approach by doing all of this in the beginning,...
by Victoria | Oct 21, 2013 | NHS stuff, social media |
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,...
by Victoria | Oct 20, 2013 | #AboutMeLeeds, NHS stuff, social media |
How much have you thought about what data you share online? Do you know who has access to it and what they can do with it? What if health and social care organisations could do a better job by sharing the information they have about you with each other? Just imagine if you could update your own health record; opt for the council to text you reminders to put out your bins; download an app which pushes relevant information to you about health, wellbeing and leisure in your city – a sublime vision of the future or one which leaves you cold and indifferent? As part of the Leeds Digital Festival, local NHS organisations and the council, supported by NHS Employers, NHS Confederation and NHS England, will be deliberating with the citizens of Leeds (and beyond) about all of these questions and many more from 21-27 October. We are partnering with Leeds Data Thing to test out a social conversation which will help shape the use of data in our city. To kick start the conversation we will be uploading blog posts every day which will shed light on the topic from a different angle – kindly written for us by people who use local services, council officers, clinicians, councillors and chief executives. Everyone has a view, an opinion, a fresh perspective – something we hope will engage you, interest you, and spark a conversation. Here are snippets from just a few of the many posts we’ll be sharing: @PositivitySmile uses Twitter as a source of support for their mental health problems and is startlingly frank about their worries...
by Victoria | Oct 8, 2013 | #AboutMeLeeds, social media |
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...