Tuesday, 12 July 2016

The Disruptive Patient (part 2): Disruption in Action

I should clarify that by 'disruption' I mean a change to the way things are done. Disruption  bringing new ideas to the table and turning things on their head.


Or, as mhabitat say: 

            discover - dream - design. 

I am taking part in a Digital Discovery Lab facilitated by habitat today and will be tweeting @DerekCStewart with #myresearchlearning and look out for @KarenInns1

Social Media has completely disrupted the way in which people find out about their health and research. These communicate across countries and transforms the means of communicating with those with similar conditions. 

We are seeing the emergence of completely new groups using the breadth of social media platforms

We don't have to wait until the first Saturday of the month to meet. We can chat at virtually any time of day or night. 

Even many of the traditional Patient Self-Help and Support Groups are also using social media as a means of keeping in touch with their membership and promote the help they offer.

Recently, I came across  Marie Ennis-O'Connor, who set up the Patient Empowerment Foundation. Marie has compiled a list of over 400 Patient Advocates on Twitter. Follow Marie @JBBC 

Organisations such as PatientsLikeMe and providing platforms to enable patients to talk to each other, raise topics of interest and learn. 

Roz Davies recently gave a talk at the Royal Society of Medicine about the under-utilised resource of patients. 

You might want to read more and watch the video here

"We are witnessing the emergence of a new phenomenon in healthcare: self-organising, online communities of patients, carers, clinicians, researchers, academics, and industry all focused on a particular disease area."

Note: I suspect there may be more disruption to follow. Thanks for the follows, posting and retweets.

Friday, 8 July 2016

The Disruptive Patient (catalysts for change?)

Oh Dear! - a patient opinion?

We, patients, used to be so well behaved. We would wait patiently to be seen, respond to a number being called out, sit quietly to receive words of wisdom and then take our medicine like good children (well, sort of).

"When we want your opinion, we will give it to you!" a Consultant tells his patient as he leads his junior doctors on a ward round in the accompanying cartoon (source unknown).   

When we wanted to talk to others with a similar condition we might, if feeling left out attend a self-help group. If particularly daring we might even start our own group group. 

Mutterings would be heard from within the professional ranks that these were dangerous groups offering whacky advice. Sometimes, a nurse or friendly ward sister might set up a more 'formal' Support Group which included some professional advice and support. (At best - empowering; at worst keeping an eye on us!)

So Dear - the internet?

We, patients, thought it was helpful. We could look things up, begin to show an interest in our condition and take some responsibility for our health. 
We would press print and excitedly clutch pages in our hands as we headed towards our clinic appointment. 

'You can ignore all that rubbish!', was the all too familiar response. 

We persevered and began talking to patients at various times throughout the night from Australia to Switzerland, from  Ulan Bator to Ullswater. Our freedoms were being explored (some faltering steps)

My Dear Patient Involvement...an on-going tale!

We, patients and the public, began to be invited to join meetings to comment on health services. At worst, it remained  giving an opinion on the colour of the waiting rooms. 

At its very best, it is about informing and forming practice, policy and strategy in all aspects of health and social care. I think that some of the very best is taking place across health research where a culture of co-production is gradually taking hold. 

Yet, despite progress it still a long way to go if research is truly to reflect the breadth of our society and ensure that everyone's voices are heard.

Dear SoMe! - a smartphone, apps and SoMe (Social Media)

We, patients, are now more 'disruptive' than ever! 

May I make it clear, I am not talking about throwing that old copy of the National Geographic across the Doctor's waiting room or sticking my tongue out at the Consultant - (though there have been moments).  

Actually, I mean where we are true partners in Disruption leading to Innovation where patients begin to lead the way we think about healthcare and clinical research.

We are already away ahead of the curve in terms of use of social media for support and advice than people working in healthcare. In fact, some NHS Trusts, like King Canute, are stopping staff using social media! 

With such thinking, the printed word would be banned and writing implements seen as a health and safety risk. 

Wake Up! - the disruptive patient is here - intruding, unsettling and interfering. 

Ah, Dear Brutus (To healthcare services and systems wherever you are)

"The fault, dear Brutus, is not in our stars, But in ourselves, that we are underlings."

The advice from Cassius to Brutus which ultimately led to Ceasar's downfall reminds us that we do not have to accept the status quo. 

Shakespeare offers these words to help us understand the world. But, today, would he still be using a quill? 'SoMe or not SoMe?' The tweets and messages are our outrageous fortune. 

The Digital Age is here - Long live the disruptive patient. A Digital Discovery is around the corner with mHabitat so look for tweets and further blogging. 

Now, Dear Reader

Next week, I shall further comment upon the disruption, the disrupted and especially some of the DISRUPTERS - perhaps they are the new Shakespeare, Marlow, Wade, Kane and Hare for patient advocacy. As always, clinical research will play a part on the stage. 

* Note: My pre-cancer life was productively spent with so called challenging pupils, young people who had experienced behavioural difficulties and been repeatedly excluded from mainstream education. 

The challenge was not their behaviour and problems. The real challenge was for us, as the responsible adult, the trained professional, the educated human-being to find ways to help them learn, to find acceptable solutions and rebuild their lives. Is that not similar to the role of the NHS?

Those young people continue to drive my thinking and made me ask the questions I ask today. I am grateful for their disruption which helped change me and they way they learned. 

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