A Social Contract?

This was the topic #socialcontract15 for an event hosted by The Academy of Medical Sciences and the British Academy for the humanities and social sciences which I was invited to attend. 

The model, first described in 2008 by Dr Elias A Zerhouni, former Director of the National Institutes of Health, USA talks about 4Ps - Predictive, Pre-emptive, Personalised and Participatory. 

I arrived, looking forward to listening and contributing to the discussion but then when a speaker was unable to attend I was invited to take their place. 

Here is the talk I hurriedly put together.

"I lost my voice, I found my voice..."

These repeated phrase comes from a work of art from Glenn Ligon, the American artist.

He is not just speaking to me, with my throat cancer experience. He is speaking for, to and with people of different races, cultures, gender and sexuality. He is inviting us to think beyond the usual subjects who are interested in their health and wellbeing. His work is rooted in exclusion and inclusion. 

So, as we explore this concept of a social contract our greatest challenge is to ensure that we do not increase the gap in inequalities. 

It is right and proper that the Academies start from the perspectives of science and medicines but I suggest that the fourth P - Participation - holds the key. 

Too many patients feel they have no voice or have lost their voice in healthcare. We assume we can misbehave, get ill and the NHS is there for us. When we visit the NHS we are told what will happen to us.

Participation is not just taking part as a guinea pig, being given information or told to behave in a certain manner. 

Participation, for me as a patient, is about a series of active, continual dialogues which helps me understand my health and wellbeing. This has led to far less visits to any doctor since I was ill.

A social contract has to be about 'change' in approach, manner and behaviours. It needs to include...

Shared decision making as a real, honest and tangible reality

Rights discussed as a part of responsibilities whilst avoiding stigmatising individuals or communities

Open talk about the costs of healthcare and benefits of prevention

More patients have access to information through the use of new technologies and social media. These factors require a shift in the ownership of health, the balance of control and power.

I work one day a week for the NIHR Clinical Research Network advising on the involvement and engagement of patients and the public. I am often struck by the number of people I meet who have become actively involved talk about having a much better understanding of their health and the challenges facing research, medicines and science. They too talk about less visits to GPs.

By being offered a voice, people are able to inform the research agenda, to influence policy and practice which has helped develop better patient outcomes, avoid duplication and campaign for speedier research and quicker application. 

The public are extremely positive and highly supportive about NHS research as it provides more opportunities to find out about their health. 

The participation is genuine, meaningful and has added value. Our challenge in any social contract is to help us all understand the gains that can be accrued.

Cancer Research UK has recently published their plan Every Patient a Research Patient. 

Let me return to the artist, Glenn Ligon. The title of his exhibition is Encounters & Collisions and I suggest that we need to reach out to Encounter and talk with patients and communities and accept that there will be Collisions. 

Maybe we should look towards all meetings with the public to be opportunities to discuss health more than ill health

Answers, please!

Where might you find answers to these questions in 2015?

• How can the public find out what’s going on in research?
  
  
• How to find out what research has been - or is being - done on specific problems or conditions?
  
  
• What other information is available on the internet?
  
  
• Who can you talk to about research in the NHS locally?
  
  
• What are the different ways in which the public can get involved?
  
  
• How can the public influence research priorities?
  
  
• How can the public influence research ethics?
  
  
• How can the public get involved in commissioning or undertaking research?
  
  
• How to apply for funding for a research project?
  
  
• How can the public get involved in the process of interpreting results?
  
  
• How can the public get involved in disseminating results?
  
  
• How can the public get involved in making sure that the NHS takes account of research?
  
  
• What support is available for the public who wish to be involved in NHS research?
  
  
• Do the public who want to be involved need any particular skills or qualifications?
  
  
• How can you access the training that is available?
  
  
• How to involve the public who are often left out?

Pleas note that for ease of reading I have changed the words ‘consumers’ to the public; ‘R&D’ to research; and ‘InterNet’ to internet in the above examples to bring it up to date.

These questions come from a little booklet I found in my loft recently. Better still, each question had a short pithy answer to help the public.

The booklet is titled...

Research and Development in the NHS - How can YOU make a difference?

It was written, in 1999, by the advisory group Consumers in NHS Research which later became Involve.

So, where is today’s little easy read guide?

How can we all work together to provide this information?

and...are there more appropriate questions we should be?

I would certainly want to add a question about taking part in research, inviting comment about the experience and finding ways to thank each other.

How can we demonstrate the benefits of involving the public in research?

NHS Research and Development North West Catalyst Event

Over 100 people, the public and from research, gathered for an Open Space workshop at Aintree. 

The question for the day was - How can we demonstrate the benefit of involving the public in research?

Each word conjures up many different perceptions and understandings - HOW, WE, DEMONSTRATE, BENEFITS, INVOLVING, the PUBLIC and in RESEARCH?

Let me invite you to think differently by changing one word in that question so that it reads... How can we demonstrate the benefits of involving the public in SPORT?

This change in the question immediately makes us want more information, to seek much further clarification, to be far more precise?

We would probably begin by asking which sport. So what is the CONTEXT?

We might ask whether it personal fitness or part of the team. So PURPOSE is important. Are we part of a team (from cleaning the boots to playing on the field), watching (home or at game), helping (local team or Games events), personal fitness (in general, following illness or accident, loose weight). Ewe need to be far clearer in defining the PURPOSE

How many goals am I expected to score? Am I coaching or driving the coach? Am I helping organise TASK 

I blog as an individual, I may be part of a team when I am working with researchers, I am part of an organisation in my work. 

DEMONSTRATE THE BENEFIT

You cannot measure someone's benefit of taking part in football training if you take them to a badminton game. Yes, there might be a benefit of involving them in sport but it can only be measured against by definition of what they choose to do and how effective it has been. You cannot measure the benefit of watching the game against the physical taking part.

1. Place the involvement in CONTEXT (in terms of the organisation, the research, the people)
2. Define the PURPOSE 
3. Make the TASK specific and produce an EXPLICIT AGREEMENT 
4. Assess the BENEFIT to the research, the researchers and the public

Only then can you effectively ASSESS the value and benefit (research, researchers, public)

1. Football or badminton; is it active involvement or active engagement

2. Am I a supporter, am I playing, refereeing or managing?

3. What is is expected from me and of the others involved? time, costs, commitment

4. Am I fitter? Have I enjoyed taking part? Has my team won? Are we celebrating?

And in all of sport we begin by giving people choices about what the individual wants to do?

Let's, at least be clear about the game, the rules we should abide by and opportunities that we have to contribute and take part in a way that best suits research and our needs. Let us work together to offer a broad range of opportunities to suit the needs of research and those who get involved.

It is also really important to remember those whose voices are least heard and communities who are unrepresented.

Visual recording by morethanminutes.co.uk @visualminutes

http://www.youtube.com/watch?v=4vEBcr_YkHU

http://www.youtube.com/watch?v=PwpQMtTSi5c

Twitter: @NHSNWRD

Linkedin: NHS R&D North West

In Praise of Researchers - updated

...and tips to encourage public involvement

Thanks to all those who tweeted and retweeted about this article. Some of you are mentioned in the dispatch further down the page. This blog post has now been visited over 1000 times in the last few weeks. I have been wondering why this is the case. Your views are most welcome! I think the fact that I have expressed us 'walking together' rather than you must do public involvement; that it is about the shared learning and understanding. Yet, it does seem to demonstrate that we need to just say 'thanks' more often in a busy world. TWEETING - see below.

1. Thank You!

Researchers, in my experience, are good people who receive few thanks for what they do. The recognition they receive is mainly based on the judgement of the number and quality of journal publications but this isn't the same as saying thank you. We should also be thanking many of those who try and fail as much as praising those who succeed because research that doesn't answer a specific question can be invaluable for others treading that path in the future.

Equally, for many researchers, you couldn’t do your work without the willingness, donation and support of the public. The public does not just bring 'experience' to the table and 'knowledge' does not only belong to research. We all bring health experiences to the table and have a wealth of other knowledge that can be shared and used to our benefit.

Tip 1 – Start by thanking each other and recognising the opportunities to be gained from the exchange of knowledge and experiences. It is what we will do together that is important.

2. Researchers Care!

The vast majority of researchers I have met care deeply about their research subject and want to make a difference to patient care. You want to make things better and are keen to understand the public perspective. You welcome help but are not always sure how to ask, who to ask and where to ask.

Some of the best researchers really want to know what is best in order to improve their clinical practice. They see the vital link between research and good clinical care as just sensible and wise. Others in laboratory work rarely get to meet those who are the potential beneficiaries and find it a highly motivating experience.

The public, too, are very keen on research and want to help, so...

Tip 2 – Begin by identifying the things that are important to each of us, that could help improve the research and will motivate us to change things together. 

3. Researchers are Busy!

Many researchers carry out this work on top of their clinical duties. Ideas are thought over, previous research is scoured, proposals are written too often in the late hours of the evening before the draining task of seeking funding.

Researchers want to get the research right, relevant and meaningful so the public are best placed to make sure the research is significant and reaches the right people and communities. 

The public can help but please don't try to do everything at once...

Tip 3 – Make a list of two or three basic tasks that can be achieved in a few weeks to demonstrate the benefit e.g. reading and commenting on the lay summary; advising on the way the recruitment is to carried out.

4. Researchers Jump!           

Researchers are constantly being asked to jump, higher and longer, to follow different regulations, legislation and bureaucracy. They already set a high expectation on themselves and can see involving the public as an added burden rather than an aid.

The public also places high expectation on research and it is only by understanding why some of it takes so long can be really helpful. 

Why is there such an insistence on giving reams of pages in the Patient Information Leaflet? Could we be working together to improve things like this?

The public, being involved, can help to remind the researchers of the difference that has been made because they are not involved on a day to day basis.

Tip 4 - Record what happened, before setting off with a simple realistic plan to involve the public that reaches out into communities rather than relies on one or two individuals

5 Researchers Worry!

Researchers worry about the questions they ask, the various measures they will use, the research method they have chosen. The complexity sometimes means that the real purpose is lost and just too confusing.

The public can be excellent listeners and can provide an external eye, wider perspective and help translate the complicated into plain and understandable language.

The other day I heard from a researcher that it took 3 months longer because he spoke with patients but it was the best 3 months as the research proposal is of a far higher quality.

Tip 5 – Walking side by side with the public helps keep the research grounded and provides a reality check and gives funders and public bodies reassurance.

Last and NOT least

The public might set off to help the research and the researcher but the involvement itself makes a difference...

I came to give a patient perspective and became an advocate for high quality research.

On a personal level I now have a greater understanding of my own health and wellbeing, am more active and have a better diet. My conversations with health professionals are now far more about 'shared decision making'. 


TWITTERING! 

Thank you for all these comments and please follow them all. 
(I took these from Hootsuite so may have missed a few of you - I apologise to anyone I missed but retweet and I will add your twitter contact.)

Some positive words in praise of Researchers...and tips to encourage public involvement @nwpirf 
Partnership and mutual respect. How things should be! @AilsaDon 
Great to this kind of bridge-building @joannacrocker 
Wondering why and how researchers involve the public? @Pen_CRU 
Really resonates with our team. "Walking side by side with public" is exactly what we want @superpiran
Really great blog for all to read, but particularly for researchers! @JPUHResearch 
Another thoughtful and intelligent perspective @LindzBennister 
Thank you for the research praise @NIHRCRN_nwcoast - 
On the button as ever @jeremywhelan 
Appreciating the work of researchers @louca_mai 
This is a lovely article praising researchers for their work @iamboylan 
A great blog! @keeling_michael 
And thanks to everyone who works with me @MEJoBest 
Really enjoyed your latest blog @JohnBaker_UoM 

Lovely blog-post @SalfordRD 

Superb blog post @acgrundy 
Thanks @bcpft_research 

Thanks for retweets:
@matt_westmore @HealthResComms @mickmull @dollyblue3 @Gozde786 @BeyondDiagnosis @LLocock @AntimonyWray @SallyCrowe @Wellcometrust @SimonRStevens @Brunettebridge @BellaStarling @HealthSciences @AntheaMould @NIHRCRN_KSSPPI @ZoeBelshaw @ElspethMather @LeighHibberdine

(There were many more and I shall try to add you later)

Further Reading 

You might want to read the excellent article about the cart and horse by @ActiveKritizen

...and 'Why study data belongs to the public' from @dr_know 

.....and for an example of thanking Researchers have a look at Wellcome Trust 

Health and All for RESEARCH, research for ALL

Why All for RESEARCH, research for ALL?

            Health is not bought with a chemist’s pills

            Nor saved by the surgeon’s knife

            Health is not only the absence of ills

            But the fight for the fullness of life.

The Health Poem by Piet Hein, written to celebrate the 40th Anniversary of the World Health Organisation reminds us that it our health that is key even when we are ill.

All for RESEARCH

Health, illness and wellbeing

Why am I All for RESEARCH?

I am All for RESEARCH because we ALL have questions about maintaing our own health and that of other friends and family. I believe that only good high quality research, that is appropriately regulated and approved, will give us the evidence to show what keeps us healthy, help diagnose our illnesses more effectively and provide us with the best possible care, treatments and services.

I am NOT 'all for research' that wastes time, effort, money, that hides data, that doesn't collaborate but I am still for RESEARCH that sometimes doesn't know what it is doing because many of the great discoveries come about by chance, accident or enquiries into something completely different. 

I am All for RESEARCH taking place in national health services as a part of the patient pathway that takes account of patient need, listens to patient experience is inclusive in design and open in all its processes.

Why are public All for RESEARCH?

Our lives, activities and money

I think we can say that the public are, generally, All for Research. This seems to be evident in the continually increasing numbers who participate in clinical studies, their positive attitudes and good experiences. 

All for Research is clearly shown in the extensive and imaginative range of activities undertaken to help research - from fun runs, races for life, midnight walks, to far flung adventures - most of which with the support of families, friends and strangers. 

All for Research can be counted in the money raised directly in cash, in donations of clothes and bric a brac as well as that raised from walks to outdoor pursuits. 

And then there is the Government's contribution to research by investing tax payers monies. 

...research for ALL

Why should our call be research for ALL and why is it important? 

We should all want to know whether we are receiving the best evidenced based care. I like to know if the health professionals are interested and involved in research because as a networked healthcare community then we, as the public, are ALL more likely to get the best care. We should want for this for everyone.

We all need to do more to help people to know about research and be able to learn more about it. This should include its value and uncertainty.

The Ok to ASK campaign helps to raise awareness and invites the public to initiate the conversation about whether there are any clinical trials available and open for participation. Taking part in research should become a normal and natural part of a patient pathway in any high quality health service. It should be a central part of good commissioning.

There is a lot of research taking place in University Hospitals and in the larger Trusts. There has been an increase in research being carried out in GP Practices (about half of the practices in England) and in Care Homes but there is more to do. It is now possible to see how Trusts are doing in your area.

It is also the responsibility of research to carry out studies in the populations for whom the research is intended so much needs to be done to encourages all cultures and communities to engage with research.

These are just a few of the reasons, I believe, research should be made more available. 

Do you have any others?

Finally, as Piet Heim reminds us this is a fight for the fullness of life. 

ALL for RESEARCH, research for ALL!

What might we want to shout about for RESEARCH and what might we want to have for ALL?

It was d'Artagnan, in The Three Musketeers, who shouted,

 "All for one, one for all"  

...though the phrase had been in use much earlier and is also an unofficial motto of Switzerland. I have merely brought it back into use - intellectual borrowing and recycling - rather than theft is what I would suggest.

@activekritizen reminds all of us, Cardinal Richelieu wrote that educating the masses is dangerous


Here are my top 5 in each...

All for RESEARCH that...

1. Improves the quality of people's lives
2. Seeks answers to the questions, patients see as relevant
3. Plans and designs the proposal with the public
4. Provides lay summaries of intent and informs participants of the results
5. Opens the doors to participation, practice and governance

- research for ALL...

1. To find out, know and understand about research and value
2. To be able to take part in studies as part of their health journey
3. Communities, clinics, care homes as well as hospitals
4. Ages, abilities and cultures
5. Stages of health, well-being and medical need

If we are to shout "All for RESEARCH, research for ALL" then we have to make clear what people are able to do. 

A. The public are more able to find out about and take part in research

B. Research participants have a positive experience with an entitlement to know what happens as a result

C. The public being given clearer information about how and where to make a difference to research 

D. All research organisations working more collaboratively to place the public at the centre of their work

E. Researchers and funding bodies being encouraged to report and publish on the public impact in research

To achieve these we should set specific targets for each of the following:

A. The Public are able to...

• find out about research and how to take part in studies with three clicks of a mouse from national NIHR and local NHS websites
• register their particular interests in research and receive regular updates in every local area
• learn what research has found out in different areas of health in understandable language
• see signs and advice about how to engage and get actively involved to improve all aspects of research both locally and nationally

B. People who 'take part' in research are...

• acknowledged/thanked at start of a study and more preferably at the end
• given information about how/where to find the results of those  studies
• have opportunities to comment on the experience of taking part 
• given choice of keeping in touch, to help shape research and working with researchers 

C. Individuals and Groups are...

• enabled, supported and empower to make a difference 
• offered opportunities to learn and develop, for thr public and professionals, are available in different formats. Events, workshops and training are posted on an online calendar
• encouraged to record impact the public have made to improving research is captured and reported annually and in medical journals
• declaring interests and affiliations to industry and other commercial interests
• supported by effective systems, structures and resources regionally, locally and nationally 

D. All Research Organisations

• work collaboratively to achieve the aims of a research active nation 
• offer clear choices for the public to inform and improve research in their organisation and signpost to others
• engage cooperatively with Charities, Funders and the Commercial sector to improve research
• publicly report on the impact the public are making on their work

E. Researchers are 

• meeting and discussing their work with the public
• making clear the intended potential benefit of the research
• planning and working with the public to ensure good relevance, practicality and purpose
• taking up the challenge of producing good lay summaries of intent and result 

If this was a petition - would you sign up to it's intent?


We must do this in an imaginative and creative way which gives people the tools to make a difference. Why? Watch this presentation by Ken Robinson.  

Next, I shall be writing an explanation of why, I believe, we are already 'All for RESEARCH' and why it is vital to enable '...research for ALL'. 


If you want to know more about how YOU can find out, take part, use, help, influence and give to research then click on CURIOUS for a mystery tour.

To Know - The Mystery Tour begins

Roll up, roll up, roll up! I bid you welcome, as your mystery tour guide. 

You can take the path in the middle and read all of these posts in order, or choose certain marked sections illustrated by the stones on the left or you can randomly jump from place to place.

I hope you will find selected some of the places that I have chosen are of interest and of value! I trust that you will learn more about the vital place that research holds in your health and wellbeing. Increasingly of the opinion that our role is to help people make connections. 

So, are you inquisitive, searching, enquiring, intrigued, keen to know more, fascinated, questioning and even demanding about improving your health and well-being then CLICK on the words in BOLD to begin your journey. 

Are you keen TO KNOW more about research and your health?
(I wonder about some music to get you started) 

There is a lot on the news these days about new drugs that have been discovered. But then, they say it might take years until it might be available for patients. 

What is a Clinical Trial?

... and if English was my third or fourth language how could I learn more. Here is an example of the same YouTube clip in PUNJABI

What are the different steps or stages that happen in research? (You will have to scroll down the page in this example yet there are great stories in there too)

If it is so important why aren’t more people talking about research, celebrating good practice and telling the public about it. If you have something to shout about, then add it to the Facebook pages. 

I used to think it would be great if there was somewhere you could go to find some useful short video clips and then I discovered that some clever people here had set up their own YouTube Channel. 

Why not register and start searching for explanations and treatments about your condition. 

This YouTube clip illustrates how someone's personal experience with chronic pain can help researchers.

You can also find out more about research from this new online learning resource

What Next?

• How might any of these website links help your health and wellbeing as well as those of your family and friends?

• Who could and should you tell about what you have learned?

While you are thinking about these next steps then why not listen to a little more MUSIC.

Let me know of any other places I might suggest in future to add other, different steps on the journey. Better still, tell the stories about what you have found, share the links with as many people as possible and let me know what happens and spread the word on twitter @DerekCStewart

Begin wherever you like. Enjoy the sense and serendipity of it all. All I have done is offered a window pane through which you can look and begin to see the view.  

CHALLENGE WARNING (These are invites for you to do something about)

If you can't find anything about what you want and need. What are YOU going to do about it? What do YOU need to help you achieve what you need? What needs to change for it to happen?

Roll up, roll up - At the next stop in the tour I shall be looking at how we might take part in research.