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.

Learning for Involvement

Many of us who have become actively involved with health related research dislike the word 'training' as it seems to imply that we need to be taught something and moulded into behaving in a certain manner.

Learning (at our own pace, in our own time, at our own leisure in a manner that allows us to choose what we want to learn when we need to know) seems a much better description.


I am speaking, of course about Informing Healthcare Through Clinical Research and am going to be blogging here and tweeting @DerekCStewart with #IHTCR in the weeks running up to 6th June and during the weeks of the course.

This is a transformative, free, online course that means that I can find out about Clinical Research, think about many of the issues, understand some of the challenges and build my knowledge about what needs to happen to improve our health and wellbeing.

The first outing of the course had over 4000 people taking an active part with more than half staying with the course. Many members of the public joined in as well as people from throughout the world.

It is only fair to point out that I appear in the course, helped @kareninns1 to get the views of some patients and we both work at the National Institute for Health Research Clinical Research Network. I am therefore biased yet thoroughly enthusiastic.I have also written previously in this blog about - It's a MOOC, take a Look.

For years, patients and the public, who become actively involved had to wait for any courses and other meetings to make sense of clinical research. 

The major shift here is that of control and autonomy - where we are given more choice and power to find out for ourselves. This is not training - it is learning.

I much prefer the term learning and am grateful to my colleague @emma_lowe for pointing me in the direction of Jane Hart. This approach to Modern Workforce Learning applies even more for the public trying to learn in research. 

Our approach has been to get people together to talk about research through the Building Research Partnerships programme which acts as an introductory session for the public to meet people working in research.  There is a nice video clip of BRP in action from NWC CRN and the course notes are now part of CRN’s National Learning Resources

This takes me very nicely to the excellent and extensive campaign #whywedoresearch and the TWEETFEST which took place during the week beginning Mon 16th May 2016. 

On 17th May 1230-1330 @kareninns1 and @DerekCStewart hosted a Tweetchat on the very topic of Learning and supporting involvement in research with #myresearchlearning

You can also find out more about the Patient Research Ambassadors Initiative (PRAI) with @SimonRStones in the evening between 2000-2100hrs. Find out more about PRAI on BrightTalk TV

All of this excitement led up to International Clinical Trials Day and the OKtoASK Facebook discussion Friday 20th May and...

     ...the relaunch of the MOOC 

           Improving Healthcare Through Clinical Research.





Look out for more on learning in my next post and you might want to have a look at a recent webinar on the challenges and opportunities of involving the public that @AntimonyWray and I gave for research trainees.

A Safe Space - some further thoughts

"Whose responsibility is it to make arts venues a safe space for vulnerable individuals when staging work that is potentially triggering or provocative?” 

This challenging question was posed by Ziggy's Wish and almost instantly invites thoughtful consideration. In one respect I make a choice to attend so I carry a certain responsibility but I have most likely bought a ticket so do I have a right to a duty of care from the organisers?

@Delia_Muir and I (@DerekCStewart) followers of @ziggyswish were invited to write responses. You can read the whole piece here. 

Delia and I are advocates of public involvement in health related research and have a shared background in drama.

Ziggy’s Wish use the arts as a powerful and effective means of ‘engagement’ in a way which delves beyond the surface to help make statements about people’s lives which can have meaningful impact. This means that they are at the cutting edge of exploring people feelings as well as their views.

Health research and drama, it can be argued, set out to ask questions, invite involvement and participation which it is hoped will answer questions that improve people's health and wellbeing.

@RachelMoorhouse, Creative Producer with Art with Heart asks... 

• Do our voices come from a place of authenticity and authority, through personal or shared experience? 
• Do we feel confident that we can respond to difficult questions or conversations that the work may provoke?

The first question lies at the heart of meaningful patient involvement. The authenticity and authority of being affected through personal illness or that of a close friend, relative or colleague. As we become involved in helping researchers to make research that is more relevant and answers appropriate questions, can we feel confident when we challenge and criticise professionals in their field.

Rachel equally speaks to all clinical researchers when she recommends...

• Speak with organisations and individuals with knowledge and experience, those who are proficient in dealing with the complexities of the subject. Ask their advice, and be honest about your shortcomings. Point your audiences to these organisations in promotional material, so that they can seek support if required.

The word 'audiences' can be simply translated into research participants especially if our goal is a better relationship with the public.

Delia Muir reminds us of the ethical issues for research - 

• You could look at this as an ethical question. If I wanted to invite vulnerable people to take part in a research project, I would have my work scrutinised by an ethical committee and would have to justify my approach. 

Matthew Green Associate Professor of Modern English Literature, University of Nottingham
says, the same article...

• ...it seems clear that the responsibility is and should be a shared one

Responsibility for research, given that much of it is funded and supported by public funds must be shared.

Thank you Ziggy's Wish, Delia Muir, Rachel Moorhouse and Matthew Green for the opportunity to join in a discussion with you. Thank you Hannah Ellis and Ravi Thornton for the invitation.

Final Note

Before my cancer I was a drama teacher working mainly with young people excluded from schools and for two years across different  special schools in Nottinghamshire. After cancer I worked for a number of years with theatre companies like Interplay, Full Body & The Voice, Graeae and Roundabout producing resource packs which contained objects and elements from the performance.

Yet, the very nature of the arts and theatre is precisely to evoke and at times provoke a ‘feeling’ response. This is especially true of drama, where through the safety of a fiction we can explore issues and help make meaning and sense of the world. The live and immediate places us in the heart of the action.

It is what makes drama in education an effective learning medium and separates it from other subjects. Where else can we try things out, move forward and back in time, explore what is being said alongside what is being thought and felt. When effectively facilitated the action takes place ‘as if’ it is happening now, at this moment in time with us as participants which allows us examine situations at a very personal level. The fact that it is a ‘fiction’ and that the people are in-role provides its own barrier of security.


Equally, we are searching for answers in clinical research and the safety of ethics committees, robust processes and good questions are vital components.

So, should we in in clinical research be using the arts more to engage, involve and have a meaningful relationship with the public?

Open Research - No Hiding Place

As we think about Open Research, I have chosen 'No Hiding Place' as the title for my talk. This was the name of a TV police drama in the late 1950's. It brought to the small screen a more modern approach to policing that had been categorised by the reassuring local police presence 'Dixon of Dock Green'. 

It was a very different time. 

A single television channel, in black and white, which was availabile for a few hours during the evening. The world in colour provided only in short edited 'newsreels' when you could afford to go to the cinema. 

No Hiding Place was intended to capture the changes in policing and, I suppose, send out a message of reassurance to the public. I was enthralled and engaged by owning a toy car similar to the one seen in the opening sequence. 

We live, now, in a very different world and I would like to illustrate the need to engage and actively involve the public using three objects: my phone, wallet and wedding ring. These are presented as symbols of the need for greater openness and complete transparency.

Let me start with the ring. It represents a relationship.

For years in research there was NO relationship with patients and the public. We were merely seen as trial subjects, to be done to, numbers for recruitment. Research was for researchers. Actions were taken at times without our permission and even without our knowledge. Belsen, Tuskagee, Liverpool. Individuals, like Henrietta Lacks, were not acknowledged nor recognised until years later. The public reactions to these events resulted in policy changes, damages reputations and for industry adversely affects the share price.

This takes me to my wallet - in the past the financial relationship with the public was similarly uni-directional. Research charities set up, ostensibly by scientists for scientists. The desire was genuine yet left a pervading attitude of we are clever people who can find cures: give us money. The outcome has allowed many of us to live beyond the diagnosis of life threatening illnesses but the public wants more.

You will, by now, sense a certain crude simplicity in my hypothesis yet the intention is one of distillation and clarity. 

The third object is the smartphone - representing information. In essence, it symbolises the transformational need to address open research as never before. These phones demand, enable and have the potential to empower the world of research. Equally, they hold risk, a simple comment can circulate the world in minutes in less than 160 characters 

Open Research cannot just be about open science, open data, etc. It is as much about open thinking - a change in the culture of researchers as much as the practice. 

The smartphone provides me with information 24hrs a day that will allow me to find out about and increasingly gain access to available studies through the NHS CHOICES website

http://www.nhs.uk/conditions/clinical-trials/pages/clinical-trial.aspx

I can even find out about Improving Healthcare through Clinical Research, a University of Leeds - Future Learn initiative that has had over 8000 people signing up for its first run. A familiar theme in the online dialogue is about what happens with the results of a study. 

I can communicate with patient groups, advocates and researchers throughout the world. I can help inform, persuade and shape research. Increasingly, I am seeing research that invites me to become a partner and to use data I collect on my health and wellbeing.

For researchers, mobile devices offer opportunities for better study design - crowdsourcing ideas, contacting patient communities, crowdfunding to finance a project. Wearable devices and combining data offer exciting new areas of research as well as many technological challenges. 

All of these require a very different relationship with the public in general and especially with people affected by an illness or condition. 

It is no longer enough to say the professional knows best. The knowledge balance has shifted and consequently so has some of the power and influence. 

The public is becoming increasingly selective about what they will fund and charities are responding. Care and self management of a condition are now seen as important to patients as cure. Quality of life and story can now be combined as never before.

Relationships are not easy. They begin, they evolve and sometimes they break. They seem to work best where there is joint journey, a reciprocity, an honesty and a sense of humour.

For Open Research it has to begin with more conversations with people who are affected by a condition or have a likelihood to develop it. Open Research is about maintaining that relationship in a way which is manageable and appropriate. 

There will always be people who make hiding places. 

Your choice, is whether to see Open Researcher as a way of life in research - why wouldn't you do it. 

Finally...please remember

Whose data?

Whose voluntary time?

Whose money?

Whose body, tissue, sample?

Whose health?

Whose life?

It could belong to YOU!

The notes above come from a talk I gave at a workshop organised by Vitae Connections: Supporting Open Researchers: https://www.vitae.ac.uk/events/Vitae-Connections-Supporting-Open-Researchers

Twitter @Vitae_news #Vitae15 

It's a MOOC - Take a LOOK!

Updated in June 2016

The active involvement of patients, carers and the public with research has changed for evermore and, I believe, for the better. 

For us to understand what research is about we have often had to wait for a course to be delivered at some point in the future and hope that it would take place somewhere nearby. 

Today, sees the second outing of a free online course to help us understand clinical research. From the first run in November 2015, we can all get the information in a quite simple - a new, free* online course...

Improving Healthcare through Clinical Research - join here, now! 

The course leaders, Allan Gaw and Fiona O'Neill, expertly lead and guide us through complex issues in a manner that I find illuminating and informative. I even appear to offer my penny's worth but please don't let that put you off.  

It has been developed by the University of Leeds, is open to all and is likely to run at least once a year. 

The short bite-sized film clips make it very accessible for most learners. You can get it on your smart phone, a tablet or your home computer - I have added the link to my desktop for ease. 

Best of all is that we get to chose when and where to watch - preparing dinner, doing the ironing (rarely), on a train or at present in a pub! 

The course offers the basics of what clinical research is and does but adds that further level by inviting us to think! We  can then join in conversations with other learners based on the experience of learning and not on qualifications and titles. 

The latest count is that over 3000 people are doing it! Why don't YOU! 

As you get hooked you may wish to join the online discussion or engage with the #whywedoresearch Twitter group to see the enthusiasm for research. 

The format and features of the Course allow us to choose the order of each week's topics, to move backwards and forwards at my pace and to repeat what I don't understand. 

The film clips are in short 5-10 minute slots which meant that I no realisation that I had spent up to 4 hours.

I chose to do each section in a week but I was free to take longer or cram it all into a morning. 

And...there is a Glossary, Transcripts of the programme, other Resources and useful Links. 

So, please join up and then you can take your time learning. 

Involve, Engage, Participate - Just Words?

Words and their meaning are always important. There is little purpose pointing at a 'tree' and calling it a 'dog'. 

Words in the world of research often have to be very precise to ensure that we are describing and measuring like with like to compare and contrast. The language has to be even and balanced for equipoise. 

It is also important to recognise and value the source and inspiration so I wish to thank Sarah Gibson who is writing an article for McPin about this topic. 

Just Words

The words INVOLVEMENT, ENGAGEMENT and PARTICIPATION are at times interchangeable in different contexts but there are some definitions that are commonly used. 

Personally, I tend to use the terms in a more precise manner when I am working with people talking about or working in research. It is a fine-tuning for ease of communication and understanding. 

‘INVOLVEMENT’, for me, defines and describes an ‘active presence’ where people who use services, their carers and members of the public have real say and influence in the decision making processes about their health including health research. There is a tangible sense of gaining equality or control. This does not always mean that I am in the room, at the table or necessarily right in my opinions. 

The NIHR INVOLVE promotes active involvement in research. Their website provides guidance and numerous examples of how the public of informing, shaping and influencing research ideas, design, delivery and dissemination on a very practical basis.

'PARTICIPATION’ is the word most used to describe people ‘taking part in a research study’ i.e. as someone who has consented to participate. 

A Person not a Subject

I still want to be treated with respect as a person not a ‘subject’ and to be able to make a proper ‘informed decision to consent’ but I will have no real influencing power over the medical intervention, whether I am on the control or treatment arm of the study or to say the time and place of taking part.

I do always retain the option to withdraw at any time. 

There is a certain ‘passivity’ about this relationship which is similar to that of a guide and tourist. There is no guarantee that you will hear about the destination reached by the researchers. . Research participants do, however, often mention that they learned more about their condition through the additional interactions with health professionals so there is a minor level of gaining control. 

Science and medicine organisations including The Wellcome Trust organise and support many very successful campaigns around public understanding. These have for years been described as public 'ENGAGEMENT' and tend to be about raising awareness, knowledge and comprehension about the role of science in everyday life. It all tends to be at the consultation end of the continuum (or the bottom of Arnstein’s Ladder).  

http://www.wellcome.ac.uk/funding/public-engagement/   

http://www.publicengagement.ac.uk

It doesn’t, of course, take long to look on any research website and see that that each of these words - involve, participate and engage - are completely interchangeable with people having different interpretations. There is nothing wrong, misguided or misleading about such descriptions.

The only value in any communication is that both sides are each clear about they mean and consequences of any discussion about what is intended.

However, in all spheres of endeavour, people are keen to know what they are doing, the boundaries of the task  and the no-go areas.  

In recent years, there has been a greater need to provide precision and clarity about the language that is used to engage, involve and help the public participate in research. 

Despite the precise division of these terms there has also been a growing understanding  that they are inter-connected and inter-dependent. 

If the public and patients are not given the opportunity to talk about research they are less likely to join a clinical trial or help shape the questions that need to be asked. 

Despite this pedantry, all that matters to easily find out...

• What research is taking place and where?
• Whether that research is appropriate and can I join a study?
• How to provide feedback and information from my experiences?
• How and where to work beside researchers to improve research?
• Where to donate blood, tissue, data or my time?
• How to raise awareness and funds of research?