Ahead of the session today at the Diabetes Professional Care conference, I thought it would be an interesting post to round up the various areas of Social Media and what they mean to Diabetes and Medical care in general.
For me, social media stems from blogging (and boy there is a huge Diabetes Blogosphere, which I am late to the party in), through Facebook and Twitter, even including posting to LinkedIn (which these posts also go to) to include Internet Forums. This amounts to the #DOC and is a broad church.
I participate in all of these and I think that they all provide differing characteristics and mechanisms for people.
My view is that there are a number of different use cases that I’ve seen on each of these mechanisms for interacting with a wider community. My view of these is:
Wider interaction with T1Ds – in the past actually physically meeting other T1Ds was, for me, a very rare occurrence. We are only one in every 200 people roughly!
A place to get it off your chest and share your thoughts, feelings and fears – something that allows you to say how you feel without worrying how your family/friends will worry or care and without boring them
Allowing access to the broad knowledge base that is out there. Each person with T1D has their own experience that can be shared and this can be properly provided
Seeking help, and this perhaps relates more to T2D and the lack of support that is provided, plus the fact that “orthodox” treatment seemingly ignores the obvious
“Open access” to HCPs – e.g. Pratik Choudhary and Anita Beckwith on Twitter
Given these use cases, what gets used and how does the medical profession look at these?
All the available platforms encourage my first point. All of a sudden, the world of a T1D is much less “alone” than it ever was. There are people available 24 hours a day, 7 days a week who are willing to support each other and provide advice and help. You can talk to others like yourself, whether that’s on Twitter, Facebook or Internet forums. But it goes even deeper than that, in that there are special interest groups in all of these media and if you are classic T1D, MODY, LADA, Type 3c (!) or any other of the really rare types, there are people who can share what they’ve experienced with you. There is often more experience in these platforms than in the medical professionals that are seen by most Insulin Dependent Diabetics.
The fact that you can let off steam, talk about your condition, share your experience and just generally rant shouldn’t be underestimated. That there is an easy outlet for people is important. Chronic conditions create psychological pressure, and those where any period “out of control” also causes long term damage to the body that can result in very serious issues are harder. My family doesn’t really want to hear about this stuff, and I don’t want to share it with them. If I share it with the world, the world doesn’t have to listen. It’s nice when they do, but it really is just a way of allowing me to share knowing that people can choose when they want to interact.
Hopefully some of the digging that I’ve done also provides a source of education for people. It’s an outlet for things that interest me and a way of keeping a lot of information I’ve found in one place.
Sharing experience and seeking help are probably two of the largest uses of Social Media though. In the context of all types of Diabetes, it is invaluable for this alone. I know that there are HCPs who don’t like the diabetes.co.uk forum. It is one of the largest social media sites in the world relating to all types of diabetes, and many people arrive there looking for help after so much has failed.
Likewise, many of us participate because we have a lot to share and a lifetime’s experience that may be of use to someone. Let’s face it. As much as HCPs can tell someone with T1 how to live their life, most have little experience of actually doing it, or the tips and tricks that can be used to live with the condition.
In addition, it can allow people to share supplies and access to technology items that can be hard to get under normal routes. While these may be frowned upon by the medical community, providing provisions of Insulin to a family that has gone on holiday and forgotten their supplies can’t really be a bad thing, can it?
Similarly, social media typically offers an alternative approach to T2D. Often, the feedback from GPs and surgery DSNs is “T2D is a progressive condition that cannot be stopped. You’ll end up on insulin and have complications”. And yet, if the right diet advice is given and followed, this need not be the case. Social media tends to recommend a low carb diet to manage T2, and offers ways of reducing blood glucose levels without resorting to medication. It also suggests that the mantra that T2 cannot be reversed just isn’t the case. Yes you have to manage it, but if you manage it properly, and realise that you can’t just go on doing what you want, then things can get better. The X-pert programme has got wise to this way of living, and HCPs that aren’t comfortable with it have pushed back.
For T2D, there is also the discussion about glucose testing. T2s are often told not to bother by HCPs, yet, without testing, how do you know what to eat safely and what not to eat? In many ways, social media offers T2Ds hope, evidence of results and a possible method of mitigation that the NHS doesn’t.
In this context it allows access to ideas and techniques that the general medical profession either doesn’t know about or doesn’t endorse. They come with an “At your own risk” warning, but many are properly researched and tried, and we get the opportunity to become part of the broader research.
Finally, social media offers access to HCPs in an environment outside the imposing professional environment of the surgery or hospital. Patients find it much easier to interact when they don’t feel the pressure of an appointment, in a similar way to experts in other industries. I’d like to think that HCPs are more open in this environment too, although they have to stick to guidelines.
Fundamentally, what Social Media does is make the world a smaller place for sufferers of any chronic condition. It gives access to a population of similar people on your doorstep who have many lifetimes of experience that you can tap into. These people are happily giving up their time to monitor and manage that experience and maintain order, as well as providing help, care and kindness. In a world where medical resources are hugely stretched, this level of patient power must be applauded.
The NHS should be tapping in to this experience in all of its Diabetic treatment centres, yet there is scant evidence of this. Is this down to arrogance of the medical profession or simply not understanding that people can and will help other people in the same boat as them?
I don’t know whether it’s just me or if perhaps everybody else experiencing issues
with your site. It looks like some of the text within your posts are running off the screen. Can someone
else please comment and let me know if this is happening to them as well?
This may be a problem with my web browser because I’ve had
this happen before. Cheers