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

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!

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. 

What can we all learn for involvement in research?

What can we all learn from public involvement in clinical research? 



Thanks for joining @KarenInns1 @DerekCStewart and others
Thurs 26th May 2016 from 1900-2000hrs  
Looking at Improving Healthcare through Clinical Research (The MOOC part of the TwitterFEST fringe)

Our Question: What tips do you have from learning?  
#whywedoresearch  #myresearchlearning


The observant, amongst you, may have noticed that the question in the post title and the above differ in the words 'for' and 'from'. The change of a single word invites us to think and understand about public involvement and research. 

There is large amount of information about the value of public involvement in research and the importance of actively seeking the opinion and perspectives of patients and carers. Too often it remains a process of give and take. By that I mean from the public to researchers. 

The idea of learning FOR involvement changes a dynamic. For the public it means an opportunity to learn, for researchers the chance to offer something back and together involvement benefits from a shared knowledge. 

@karenInns1 has produced a deceptively simple framework that demonstrates what we are learning FROM the public about what they want and need to become meaningfully involved. 

It begins with understanding the context. 

Quite simply how can I find out about clinical research? 

Most of us have no desire to be researchers but gain from a little more understanding. 

In the same way, says Karen, we do our own research when booking a holiday Improving Healthcare through Clinical Research is a great guide to finding out about research for those on a day trip or perhaps thinking about spending a longer holiday. 

The second statement, where to go invites us to find out more about clinical research and offers the chance to direct people to various resources.

You don't even need to travel to find out what research is taking place have a look here. 

If you wanted help in getting actively involved you don't nee to travel to Australia to find help as it available at any time here. Closer to home in the UK, we have INVOLVE

The next parts of @KarenInns1 circle, are about Staying in touch. The Clinical Research Network provides regular updates with the Latest news and case studies. You can learn from others who have been actively involved

• Patient stories.
• Patient Research Ambassadors
• Join Dementia Research-Dementia Friends

And finally how can I get involved? This really invites you to take part in a way that suits you best. 

You might begin by looking out for the Ok2Ask campaign and join us in #whywedoresearch.



If I have learned anything then it it is quite simply that we all need to learn WITH involvement. It is only by working together You can find the whole circle here or read the previous blog post on Learning, here.