10 reasons to get involved in an online patient community

This week I’m back to being a patient.  I warned you that I have a habit of jumping about a bit!

This week I’ve been thinking about this online patient community I have suddenly become part of and why I think it might have happened.

Firstly I need to go back in time.  In 1979 when I was diagnosed as having diabetes I used to go off to clinic and look around and it seemed full of ‘old people’ (I was 16).  I had nothing in common with anyone, or so I thought.

I remember one day I met a young person!  I must have been about 22.  She genuinely was the first person I had ever met who was a similar age to me who had T1 diabetes.  We met in clinic and made pledges to meet up and set up a group.  But of course we never did.  It was more difficult then.  How did you find people?  Posters? Letters? To whom? Ask the consultant?  I guess I had no idea.  The British Diabetic Association (now Diabetes UK) only communicated by post – that’s all there was.  There was a stall outside the clinic where they sold recipe leaflets that warned you never to eat anything sweet and to eat the blandest food.  I wish I still had some,  I would be interested to see if my memories are right.  The people who sold the recipes were very old in my memory!

So, at the end of all of this I coped on my own.  I have never been one for talking about stuff like my health.  If you read my earlier blog on stoicism you might see why.  So up to 6 months ago I still didn’t communicate with anyone else with diabetes.  They run days for pump users where I have my care but they are always in the working day and somehow I’m always too busy.  Interestingly I’m not sure I am too busy…….. not when I really ask myself and am honest, but whatever the reason I don’t go.

I came into social media because I was intrigued, interested and curious.  I started out as a nurse here, and I am still that.  But suddenly I found these people who were talking about diabetes.  I lurked, listened, watched……  at the end of the day I decided I wanted to be part of it and now feel that I am part of a community. I now participate and communicate with these people everyday!  What a difference from the past.

So what are the 10 reasons that I see to get involved in online patient communities:

1     No one in the community judges my decisions, choices and ‘cock-ups’!

2    There is someone there all the time, even if the UK is closed for business friends across the world in #CANDOC and #NZDOC are often around.

3     They encourage me to do well.  In good ways.  Not in HbA1C ways.  Its not always about numbers.

4     They make me feel good about helping others; using my experience to contribute to the community.

5     They stimulate my interest in my diabetes and the new advances in care.  I’m getting the new CGM fitted next week (see earlier blog!).

6     There is always someone who has the answer. The community includes HCPs and for me and they are equally generous here and like the rest of the community share resources as well as offering personal support.

7     I found more people ‘like me’ that I would ever have imagined.  I can honestly say I have NEVER had a conversation about diabetes and hormones until the recent chat on @theGBDOC.

8     They make me laugh – a lot.

9     They know how to solve real day to day problems.  Who else would spend an hour chatting about the best place for an insulin pump when wearing shorts and strappy t-shirt?

10    And finally I want to win the #GBBingo.  If you don’t know what that is you are welcome to join a @theGBDOC chat but take care to stay to the end to find out!

Find out more here: http://www.gbdoc.co.uk/Welcome.html : Chat day is Wednesday at 9pm – make a note in your diary – be there or be square 🙂

The nurse in me can’t help adding a bit of reflection…..  I read a paper by Trish Greenhalgh (see reference below – I’m sorry but I think the full text is paywalled).  The paper points to groups of patients operating as ‘communities of practice’ and what resonated with me was the difference between ‘knowing-what’ i.e. the factual context of the disease and ‘knowing-how’; the practical skills needed to live life with diabetes. Diabetes education gives good help with the know-what but the online community can deal with the know-how.

Please leave any comments – I would love to hear your views!

Greenhalgh et al (2011) ‘Storylines of self-management: narratives of people with diabetes from a multiethnic inner city population.’ Journal of Health Service Research Policy Jan;16(1):37-43. Epub 2010 Sep 6

7 thoughts on “10 reasons to get involved in an online patient community

  1. Couldn’t agree more. Would add that online patient networks help make that connection between individual empowerment and collective transformational change,

  2. Thank you Anne. You’ve also encapsulated many of the reasons why I too get involved in online patient communities. Before twitter I was keen to avoid a)talking publicly about my LTC and b)sharing experiences or advice with others with similar conditions. I think I always had the attitude that the less I talked about what was going on with me, the less likely I was to focus on it to the detriment of life, work, sanity and so on. I was (partly) wrong.

    I would also argue that donning our ‘patient’ hats every now and then makes us better professionals and gives us better insight into the mechanisms of ‘illness’ or ‘disease’.

  3. Wonderful post- your dual perspective is really valuable at helping us conceptualise the value of online community building in condition management. After all, having this support will lead to better self-management, which leads to better treatment from HCP, so perhaps its a virtuous cycle for HCP to support emergent patient communities? I believe so, which is why ive been busy developing software to enable HCP to do just that. Thanks Anne.

  4. I suspect that most of us in health rarely have to ‘walk a mile in my shoes’ – the key things that resonated with me were resilience and vulnerability despite the professional know how and how both you and your wider community obviously gain from these ‘meetings’. A great lesson for us all about the value of the sense of ‘one’ irrespective of our terms of reference or mode of achieving it. Thanks for this reminder

  5. Great Blog Anne. Your own narrative is compelling. Actually, i hear in your story a lot about the know-what, that is, the non-medical ‘what’. These are facts too.

  6. Fantastic post Anne, really enjoyed the read and can relate to so many aspects of what you have written!
    What did you do before blogging eh! 😉
    Danie X

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