It was great to be invited to submit a guest post for Diabetes UK's blog to mark Diabetes Week (9-15 June) this year. I'm a little late with it, so it may not make it onto their site this week, but here it is anyway.
"What aspect of your diabetes would you fund research into if you had the choice?"
Some of you may know I've been pottering off to London every so often recently as part of the Guideline Development Group that is updating the NICE Type 1 Diabetes Guidelines. I'm on the Group as one of two 'punters', part of the Patient and Public Involvement programme that seeks to include a grass-roots perspective from patients during the development of NICE guidelines. As a result I've had a bit of homework to do and have come into contact with a whole stack of research papers on all sorts of topics.
I have good reason to be thankful for NICE Guidelines. As a patient, well written guidelines give you a meaty, authoritative document to wave in front of your clinic or GP that says, "Look, this is what the NHS says is the very best way to treat my condition, and that's what I want". NICE prides itself on being 'evidence based' and looks into all sorts of different approaches/treatment options to try to evaluate the very best options in terms of efficacy, balanced with cost-effectiveness. Thankfully 'cost effective' is not a euphemism for cheap here. Even very expensive options, such as an insulin pump, can be recommended provided that the research demonstrates quantifiable benefits to the patient.
At the risk of offending researchers everywhere, to my simple mind the research papers I've been looking at seem to divide roughly into two camps. One is 'I wonder what...' and the other 'I reckon...'. The second camp also appears to include studies with a vested interest in demonstrating a particular outcome, sort of 'Can we show...'. It is a good job that published research is peer-reviewed and some considerable effort is taken to ensure that studies are designed fairly, but nevertheless there is a part of all of us, I think, that looks slightly sideways at research into how marvellous a new drug is that was paid for by the company that makes the product. NICE even have a special method for reviewing research papers to assess their reliability 'grade'.
So what of my own 'I wonder what...' question? To be honest, it's probably a bit more of an 'I reckon...', but only because of my own experience over the last few of years. I also suspect (given some of the online questionnaires I have been invited to complete recently) that there is already a growing body of work on the subject. Best of all, there is no Big Pharma organisation lurking in the shadows looking to make squillions from a new wonder drug. What would I like to see researched? It is simply this: "The use of internet forums, social media interaction and blogs (the Diabetes Online Community) for improved patient outcomes with T1 Diabetes".
Now I'm not for a minute suggesting that posting a couple of threads on a diabetes forum replaces the expertise of dedicated healthcare professionals or attending regular screening or clinic appointments, but diabetes is a frustratingly individual condition and can be quite isolating. Time and again I see new people join diabetes forums, or begin tweeting who have lived with type 1 for decades but rarely, if ever, met or compared notes with anyone else living with the condition. I'm a passionate believer in the power of peer support and have seen its transformative power at work in the lives of many individuals. Successful diabetes forums are huge resource of pooled experience, knowledge and can instantly put you in touch with approaches, techniques and suggestions from clinicians all over the world. Diabetes blog posts that mirror your own experience from another's perspective can give you a real sense of connectedness and help you realise that it is not just you. Conversely, another post might make you realise that anything is possible. Social media channels and interactions provide very genuine and in some cases almost instantaneous support and encouragement when diabetes is not 'playing nicely'.
There is a new breed of Healthcare Professional learning to embrace and value these resources, and it would be nice for them to have some good hard research numbers to back up their enthusiasm. Hopefully we can move away from the time when HCPs never looked at online diabetes resources and suggested that their patients never read them.
If you are living with type 1 diabetes you are not alone. There are 1,000s of others facing the same daily battles and together we can make each other's days just that little bit easier.
Hi,
ReplyDeleteI was diagnosed with Type 1 in December 2012 after an emergency admission to hospital - BS of 41.2!!! It has been a massive learning curve this year and both me and my family have had a lot to come to terms with.
At first I did feel very alone. There is a whole world of diabetes to understand which others simply have no idea about. It's been very difficult sometimes when you realise how ignorant people can be about a condition that can have such an impact on one's life. However, I am an avid social media user having a Twitter account, Facebook and other platforms to connect with the world. As time went on this year, I started to explore the internet more and find some really useful sites and more importantly connected with other Type 1 Diabetics - some who have been diagnosed all their life, some who had a more recent diagnosis - all at different ages and backgrounds from all over the world.
I can honesetly say that this interaction with others in a similar position to me has been one of the most encouraging and hepful parts of this year for me coming to terms with everything. It is reassuring to see people out there enjoying their lives with T1 and doing great things with it. I've come across hundreds of hilarious memes and have managed to laugh and joke about the condition myself. I believe it is so important to maintain a positive attitude and not let diabetes rule my life and dictate what I can do.
I myself have used Facebook and Twitter as a way to help fundraise for DiabetesUK. I took part in the Great Manchester Run in May and raised over £1,500. Importantly, it allowed me to raise some awareness about the condition and also some people who live locally with T1 got in touch.
Your comment about 'peer support' really struck chords with me. In the initial few months of my diagnosis I was completely withdrawn from talking about how I was feeling and what my blood sugars were doing. I was miserable to live with (as my parents would testify to) and I would never tell anyone how I was truly feeling. However, a couple of months ago, I sat down with my parents and had abit of a breakdown and was in floods of tears. I think I had finally accepted that this was part of my life now and I needed to get a grip and act to control this diabetes. I started looking more online and found the DCUK forum. I realised I wasn't alone in my feelings and that it is important to surround yourself with people who can help you and also very imporatnt to let people know how you are feeling. The forums guided me to two brilliant books - 'Think Like A Pancreas' by Gary Scheiner and 'Diabetes for Dummies.'
I will stop rambling now but will finish by saying that social media has been wonderful in helping me realise I'm not alone in this and that I can use diabetes as an opportunity and see it as a a challenge rather than let it get me down. It is encouraging and reassuring to communicate with others via the Internet and I have been inspired and motivated to get my life in order. I think this post is very interesting and HCPs need to understand the importance that the internet and social media can play in the management of diabetes. After all, we have 24/7 access to the internet and see our endocrinologist once every few months.
I look forward to reading more of your blogs!
Phoebe
Thanks Phoebe! So pleased you have found the DOC so soon, hope you continue to find it a source of support and useful hints and tips.
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