Following on from my talk at the Diabetes UK Professional Conference last week I've been buzzing with ideas about how patients and Health Care Professionals (HCPs) can work together, via social media, to engage with each other in order to make changes to patient care.
After a meeting with my University's Patient and Public Involvement lead this week, I came away as a brand new 'Expert by Experience' student representative! I'm not sure how I feel about being called an 'Expert' but I suppose it's an empowering title, which is what patient's need - empowering. Anyway... this is a completely new role to me, well officially anyway, as I've always been involved in projects like this but I've never been an 'official' representative before now. I'll talk more about this once my first meeting (next week) has been and gone... but for now I'm incredibly excited about the role.
Anyway the purpose of this blog is to share an exciting follow on from the Diabetes UK Conference... A diabetes tweet chat with WeNurses (the online nursing community) and Our Diabetes (a part of the diabetes online community) about how patients and HCPs can work in partnership in online spaces. Perfect timing given all the chatter about it in recent weeks!
This was a great example to demonstrate to the HCPs who have recently started following and interacting with me online what I meant during my talk when I said that we CAN work together, that social media CAN break down barriers that sometimes cause a divide between patients and professionals in a clinical setting, that online there is NO hierarchy and that way of communicating CAN be transferred to a health care setting... As Michelle Mello (@MSHMello) said during the tweet chat; "People with diabetes are nurses & vice versa so why are their barriers anyway?"
The tweet chat asked the following questions:
- How can nurses use social media to listen to the people we care for?
- What are the rules surrounding interaction with patient groups on social media?
- What do patient groups want and need from nurses in this space?
- Do patient groups want/need health care professionals invading their social space?
- Moving forward how can we collaborate and listen to people with diabetes (and indeed other long term conditions) using social media?
I had a lot of opinions and ideas bouncing around my head, both as a student nurse and also as a patient, but as I was in charge of the Our Diabetes twitter account on the night of the chat I wasn't able to share as much of my personal thoughts as I would have liked to. So I thought I'd do that now...
For me, the online space that I share with HCPs in an invaluable tool for engaging with them in the comfort of my own home, in a relaxed environment, where I can think about my questions and answers and not feel under pressure to perform. I know that there are boundaries as to what I can and can't ask - questions relating to my personal diabetes treatment and my regime etc aren't discussed with HCPs - end of. I wouldn't put any HCPs in the position where they are being asked to give me personal medical advice online and if I was offered personal medical advice, I would politely decline. However, if there's something that I want to research, something from a reliable source, then HCPs often point me in the right direction.
The online space allows me an insight into the side of the NHS that, as patients, we rarely see. If it wasn't for tweeting nurses, doctors, commissioners etc then I feel that I would be in the dark about important issues relating to my care, this something that helps drive me to understand why I don't always get the care I want or need. If I was in the dark then I think I would disengage with my health and my HCPs through frustrations with the system - that's hard for me to think about.
The online space also allows me to tell my story. It gives me a voice to share my experiences of diabetes, the NHS and the care I receive. Often I don't realise that sharing snippets of information can lead to changes being made. I'm just chatting away, feeding back the positives and negatives (often without any intention other than off-loading), but a HCP will see this and learn from it.
That's the beauty of health care social media - If we can learn from each other without realising, just think what could be achieved when we really put our minds together.
Ninjabetic x
More information about the WeNurses/OurDiabetes tweet chat and transcript - http://www.wenurses.com/MyNurChat/archive/archivewenurses11032014.php
Follow @WeNurses on twitter
Check out the WeNurses website - http://www.wenurses.co.uk/
Follow @OurDiabetes on twitter
Check out the OurDiabetes website - http://www.our-diabetes.org.uk/