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.

IMAGINATION - CREATIVITY - INNOVATION 



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. 


Images may be subject to copyright - please send feedback
 

Wednesday, 8 June 2016

Learning4Involvement in Practice

Real Learning in Public Involvement for Research


Last year, INVOLVE produced a briefing on the values and principles for learning and developmentThe briefing reminds us of the key concepts of respect, support, transparency, responsiveness, fairness of opportunity and accountability which are central for this type of learning.

  • What does this mean for the public and researchers learning and developing their thinking around involvement in research? 
  • What might facilitators need to consider when planning, preparing and providing workshops and events?


 At Bec and Derek (I am the Derek and Bec can be also be found at TwoCan Associates) we are developing our Facilitating Facilitators course in partnership with UCL BRC. It has enabled us to think more closely about what and how we facilitate to enable meaningful involvement.




Enjoyable: Public involvement should be agreeable and informative. It should encourage a sense of discovery and plug into the enquiring mind. The activities should be about problem solving and shared endeavour. 



Face to Face: An essential characteristic for good involvement - for researchers to actually meet with patients and for us to meet with those working in research. Later on it is acceptable to communicate through email or social media. It is a relationship and that should be built on mutual respect.



Hands on: This is 'experiential learning'. We learn from each other and between different meetings. We are not trying to be researchers but we are keen to understand things when we need to learn them.


Interactive: We need to learn from those working in and with communities. opportunity to meet and work with different people. For example, I began this journey in the world of cancer but have learned more through the interaction with other patient communities.





Relevant - This is how we make it of value to research. Those who are facilitating need to ask searching questions to ensure that all participants gain from the learning.

  










What do YOU think of these features?
Are they important for your learning?
Do you think these make for effective learning and development?

Friday, 3 June 2016

Guest BLOG: Everyone learns about #WhyWeDoResearch

A departure from the norm - A guest post from Bob Phillips and Jess Morgan which from a good active involvement standpoint uses the words 'cake and biscuits'. Yet how might the public help further... 


“More doctors should really know about research!” we often hear. 


Research, well conducted and methodologically valid, is a key way to make things better for all of us involved in health care, patients, families, health care professionals and the tax paying public. In this blog, we want to share with you something we’re doing to increase what doctors in training know about research!

Yorkshire centrally organises a series of training days for doctors undertaking their specialist training in paediatrics. Every year, a two-day course runs on three different occasions with the objective of taking a group of trainee paediatricians from starting to think about #WhyWeDoResearch, through generating a (pretend) study, undertaking it, analysing the (pretend) data it collects and presenting the results in a mini-conference.

Cake or biscuits are central to the sessions, as are honest, warts-and-all descriptions of what it’s like to be a clinically active academic doctor. Day one begins with an exploration of the reasons why we undertake research, what an active role in running research studies means, and some of the reasons people chose not to be directly involved. This blends into a session walking though the processes of protocol creating, ethics in research, application filling in and the pains of funding. 


The afternoon needs the participants to break into teams, and generate a raft of research ideas, debate them and come up with one to take forward. They then draw up a skeleton protocol, and overnight the study is magically* undertaken.

Bushy tailed and sparkly eyed, day two confronts the twin horrors of statistical testing and  qualitative analysis, to give a core grounding in both schools of data assessment. The importance of targeted dissemination is underlined, and the rest of the day is a flurry of activity, analysing, describing, drawing conclusions and creating poster presentations and elevator pitches for the conference that occurs in the final hour of the course.

The imaginary studies undertaken have included a study on the role of group-B streptococcal screening in reducing neonatal mortality, a trial of medications for reflux disease in infants, and a mixed-methods study of the value of ‘early’ vs. ‘late’ placement of central lines in the treatment of acute lymphoblastic leukaemia. Participant feedback has included “makes the boring stuff really interesting”, and the highlights were identified as biscuits, teaching style and beginning to understand why research really matters.

The course could develop further – and we’d love to hear how we could incorporate other elements of the ‘real’ research process in this fantastical world that gets built and polished in 48 hours. Can we have Patient and Public Involvement? Could a funding body be assembled? Would it be good to get people to write an information sheet, or review an ethics application?

This two-day intensive course takes paediatricians in training from “Huh?” to “Our study shows …” through parametric tests, grounded theory and minimally important differences. It enthuses those who had a nodding acquaintance with study design and fires some of the curious to leap into research with vigour. Could your training programme include something about #WhyWeDoResearch? Could we help you?


Thank you to Bob Phillips and Jess Morgan

You can join in the twitter conversation here or read his Storify about BecandDerek at the @NIHR_TRAINEES 


* = the session leaders create falsified data, based on the results of similar studies that have been undertaken previously. It has been quite difficult at times to persuade people that they actually are imaginary & not to believe them.

Tuesday, 31 May 2016

International Back and Neck Pain Forum 2016


#IBaNP2016

The presentation I am giving today is to the International Back and Neck Pain Forum 2016 taking place in Buxton, Derbyshire UK





The title for the event is one that is close to my heart and that of many other patient advocates - RESEARCH WITHOUT WALLS. 

It is an ambitious aim which places the patient at the centre of the work and is orientated around improving the quality of overall health and wellbeing. 

I am speaking about the role patients and the public are playing across the National Institute for Health Research (NIHR) which celebrates its 10th birthday this year. 

Research without Walls very much suggests a shared endeavour - an opportunity to work together as never before. 


The changes that are already taking place are demonstrated by the public’s willingness to help research, a greater expectation on clinicians and healthcare professionals coupled with the digital revolution which we are all experiencing. Charities are changing in the way they engage with patients and the public. Access to research is becoming easier and I will always return to the most basic point that much of the  funding is public money - from taxes, donation, activities

This excellent article by Dr Peter Brindle @petbri @CLAHRC_West invites us to think more about working together more closely in health research and service delivery - towards a time of joined up research and co-production.

I will be talking about the NIHR Clinical Research Network and our GOALS of Talking More about Research, Making it easier for people to participate, Connecting with colleagues and using social media as well as supporting those who become involved.

NIHR provides the infrastructure for research in the NHS in England and hosts the International Clinical Trials Day. You can visit the OK to Ask page on this website to find out more about how to get involved yourself, or sign up to the free online course “Improving healthcare through clinical research” at bit.ly/CRN_MOOC to improve your understanding of clinical research.

Wendy Mitchell's blog 'WHO AM I TODAY' obviously gets a mention as does the #whywedoresearch TweetFEST organised by @ClaireW_UK and @keeling_michael

In preparing for this talk I came across @paintoolkit2 as a good example off where a patient get together with doctors to create a useful toolkit.

These are all examples where the internet is transforming the relationship between patient and doctor. You might like to read this Article on the Digital Patient by Roz Davies.

And it would be remise not to mention EUPATI and NIHR INVOLVE. I shall leave you to click on the links that take your fancy but do have a look at Cloudy with a Chance of Pain





To be surprised, to wonder,
is to begin to understand.

                                                                  José Ortega y Gasset
(1883-1955, Spanish liberal philosopher and essayist

Sunday, 22 May 2016

Thank You, Research Nurses and staff

A Thank You to Research Nurses and all others who help research to take place in health and social care! 


A huge thank you to all the many individuals and teams who help make research happen here in the National Health Service (NHS) throughout the UK and indeed across the world. 
If I had my way I would have this sign at the front of every hospital, general practice, clinic, dentists, care home, hospice, etc.  - 


"WE TAKE PRIDE IN RESEARCH AS THE BEST MEANS OF GAINING EVIDENCE TO IMPROVE THE HEALTH AND WELLBEING OF OUR PATIENTS AND FOR YOU IN THE FUTURE." Signed by the staff. 

                    OR something very similar!

My praise is for all our Research Nurses, other allied health professionals, data managers and the Research Delivery Managers (RDMs) [Apologies if I have missed any 'titles' - tweet your title @DerekCStewart and I will add to list]. It is you the many individuals and teams who help make research happen here in the National Health Service (NHS) throughout the UK and indeed across the world. 



Basically, if YOU are helping get research set up, helping recruit patients, collecting samples or inputing data then, simply - THANK YOU!

You do fantastic work enabling people like me to hear about research opportunities. You give the opportunity to consider participating and help us talk about the latest research findings. Wendy Mitchell's blog 'WHO AM I TODAY' eloquently expresses the need for research and the real value of being part of this research community especially during weeks that are tough to get through.. 



Last week, I had great pleasure is taking part in the 'world first' TweetFEST with the hashtag #whywedoresearch  and the campaign website.
Click on the links and have a look. It will enthuse, inspire and may just help get you out of bed to go to work with a smile on your face. 

It was a fantastic dialogue between patients, the public and healthcare workers that had neither 'sides' between these communities nor 'boundaries' of countries throughout the world. 

It was mutually beneficial, aired views, challenged opinions and made me realise what a wonderful group of individuals we have working to help find the best evidence for the care, treatment and services we receive. 

The TweetFEST was organised by @ClaireW_UK and @keeling_michael - planning was done through a tweet and some rapid direct messaging. The value of Social Media (The term is SoMe I have now found out so have a look with that #)  

Thanks were also given to all research participants by the National Institute for Health Research (NIHR) which celebrates its 10th birthday this year. 

NIHR provides the infrastructure for research in the NHS in England and hosts the International Clinical Trials Day and you can visit the OK to Ask page on this website to find out more about how to get involved yourself, or sign up to the free online course “Improving healthcare through clinical research” at bit.ly/CRN_MOOC to improve your understanding of clinical research. Tweetchat on the MOOC Thursday 26th 1900-2000hrs

A final word about the NIHR Clinical Research Network, with whom I work as an Associate Director one day a week. We recently produced our Strategy for Involving and Engaging Patients and the public (LINK to be ADDED).

It seems to me that the TweetFEST ticked all the boxes.




A previous post on this blog was in praise of researchers and I can assure you the the same sentiments apply - THANK YOU!

Wednesday, 18 May 2016

NIHR @ 10 - a reflection

A great deal has happened in the last 10 years since the setting up of the National Institute for Health Research (NIHR as it often called). The key word is 'for' health research. 

The needs of the public have been placed firmly at the centre. The voices of patients, carers and public have been instrumental in shaping the way it works and it's direction to improve people's health and wellbeing. That is the purpose of involvement. 

It has not been an easy journey and there is still some way to go as Sir Iain Chalmers frequently reminds us and Dame Sally Davies pointed out in her talk. Some said it wouldn't work but many many more have been supportive. 

Yet, it is really is beginning to feel more like a whole organisation and Simon Denegri's report Going the Extra Mile and the new INVOLVE provide me with reasons for optimism. It feels more connected to the NHS and to charities. 

If we remind ourselves of how NIHR adds value in research as set out in 2013


The reasons, from my patient, public perspective are simple...

Questions are relevant - because no one knows better than the person trying to cope with a condition or illness the questions that need to be researched.

Appropriate Research Design, Conduct and Analysis - because  people who use services are able to offer information and knowledge as much as 'experience' to inform and shape research.

Efficient Regulatory and Research Delivery - because people have an expectation of good governance and a right to be informed about research that is of interest.

Accessible Full Report - because if people can't read and understand then the research can't be used to make a difference to their health and wellbeing.

Unbiased and usable reports - because it is for a large part public money taken through taxation, given by donation or raised by actions and activities. 


As Dame Sally Davies says - more research funders need to be reminded of the added value and importance of patients, carers and the public.