Wednesday, 19 November 2014

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'. 


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 

Wednesday, 29 October 2014

Health and 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.


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

Thursday, 23 October 2014

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.

Wednesday, 22 October 2014

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. 

... 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.

Tuesday, 21 October 2014

Improving Patient Experience for Research

Improving Patient Experience for Research & Celebrating Impact 
at Guy's & St Thomas', London

I had only just completed my series of posts on Inviting Curiousity when I was invited to attend and speak at an event celebrating the improvements being made to patient experience for research by a group of patients working together with the research team.

They approached the tasks as part of Quality Improvement rather than 'involvement' and used Collaborative Design and Innovation as their approach. 

This, for me, focusses on the WHY and the WHAT. They began by choosing some areas that were good but could be better. This immediately takes us into the land of making a real difference rather than the, too often, tokenistic manner of having someone on a committee.

The work that is taking place is being driven by patient need, professional observation and a very committed Oncology and Haematology Clinical Trials team at Guy's and St Thomas' Foundation Trust in London. You can follow them on Twitter @GSTTohct

Together, they chose 4 areas and set up small mixed teams of patients and professionals as Collaborative Quality Improvement Groups. Here is a short summary of what they have achieved... 

  • Communicating with the public - resulting in an improved website, better use of social media with some short video clips about taking part and getting involved.
  • Making sense of the jigsaw pieces of the research journey in cancer - will give research participants an opportunity to attend a short explanatory session about research
  • Reimbursements of patient expenses for taking part in research - has already resulted in quicker payments, a better system and a fuller explanation of the process
  • Helping people navigate the Cancer Centre - has produced a short booklet which maps and outline what is where at both Guy's and St Thomas' hospital sites.

These achievements will help deliver research in a far more effective manner and give study participants a positive experience of contributing to better patient outcomes in the future. Taking this collaborative approach will help with planning and preparation of the new Cancer Centre.

The group will be presenting a poster at the INVOLVE Conference in November and I urge people to find it, read about what they have achieved and learn from the process they used. 

I was really impressed by the efforts Guy's and St Thomas' are doing to build a Research Active Nation to...

The series of posts  invite you to being CURIOUS 

Thursday, 16 October 2014

GIVING makes a difference!

The willingness of people to GIVE knows few boundaries. Whether it is giving blood, tissue for research, taking part in clinical trials and other well designed studies, or helping researchers to plan, design and deliver better research to influencing at all levels of research practice, governance and policy.

Equally people Give of themselves in whatever way they can to

Are you keen to GIVE to donate time, resource, money or skill?

The British Museum makes it clear!
Most people know the big charities especially when you or a member of your family is directly affected by an illness or condition and please continue to support them. The Association of Medical Research Charities brings together many other charities so... Make a choice, click a website and make a gift

Some illnesses account for a considerable amount of health services spending but have very money given to research. You could make a difference today here to something that affects 1 in 4 people in  the UK.

Could you raise money through an activity - cycling, running, mountain climbing? You may feel, like me, that you are a wee bit too old or not as able to run.

I thought the same until I discovered this page on the NHS Choices website!

       And, yes! It works and I did it!

If you are unsure who to give the money to them have a look at Charity Choice.

There are many ways in which you ask your friends to donate and give to your efforts. Look out, next year, as I will be asking! 

Just Giving and Virgin Giving are two of the ways in which you can do this and there are others.

You can also donate blood and tissue that will assist future treatments. The UK Biobank is one such example. 

And finally, we can all give critical feedback in patient experience questionnaires about how we were treated and whether we would recommend research to others.

I hope you have enjoyed this Guided Tour and that it has helped you become more interested, curious and enquiring. Please let me know any places you think we ought to visit next!

The Tour explores how to INFLUENCE!

Do you want to have some form of INFLUENCE and inquisitive about how to make a difference?

(Please note that this is a tour of places you might not have visited so click on the highlighted text to explore what already exists!)

Influence is, for me, about having a say rather than giving your account. It is about creating a dialogue, enabling shared decision-making, and shaping the activity, landscape and culture of health and research.

Did you know that you can start by asking a question of research

I have been particularly struck, over the past few years, by a number of individuals who are making a far greater difference to health and research than many of us who have been for years 'actively involved'.

These individuals wanted to make a difference, to find out about what research exists, where to go and how to influence policies and procedures that would bring about an improvement in their lives and that of others. They did not want to be 'actively involved' by sitting on a committee to comment on papers, take part in a workshop, become a member of a national group. They wanted change and they want it rapidly.

What strikes me about these individuals and other similar patient leaders in research is their passion, drive and ambition to improve the health of others and disrupt the cosy normality if necessary!

If we really want to change things then perhaps we need to be thinking differentlywatching and reading about improvements are made in other spheres and contexts. Sally Crowe, from Crowe Associates, kindly suggested a couple of extra trips on the tour to learn about how 'culture eats strategy for breakfast' and something called the five steps to gtd.

Secondly, if we want real change we must make more of an effort to align care, treatment and research together. Too much 'active involvement' in research has just created a separate silo of patients in research. 

Recently, I blogged about a great example from the Diabetes UK Care, Connect, Campaign initiative where research becomes part and parcel of the patient pathway.

And, you may ask, why does all this matter? Understanding patient experience and testing treatments  through high quality research is what makes a difference. 

I have become very impressed by the way in which rarer diseases have more quickly realised what they have in common and banded together to identify issues in on which they can make a difference.

The fortitude of these groups is the backbone of a 'Patients Academy' organisation called EUPATI. They tweet, use Facebook about issues I want and perhaps need to know about rather than another publication about involvement.

Whether for HELPING, INFLUENCING and/or GIVING @superporan reminded me that we need clear channels of communication, a road map and clear signposting of how to help and where to go.

 If we want to influence research then we need to identify the areas we want to change and set out how the public can make a significant impact to improve their health and well-being - care, diagnosis, treatment and services.

ATTITUDE and CULTURE - Improvements have been made but by far the greatest problem is the still related to the behaviour of research which does not always believe that the patient of the public has a right to a voice. Seeking the views of the patient and public remains an afterthought in too many cases and even when it is given a hearing little actually changes. 

OWNERSHIP and RELEVANCE - The has been a shift with the greater involvement of the public but the majority of research is still conducted via the academic environment based on what researchers think is important rather than what might be wanted and needed. It is after all public money. 

QUESTIONS and ANSWERS - We have many good examples of where the public have improved the appropriateness of the research question, inclusion and exclusion criteria as well as the outcome measures against actual patient/carer experience and public expectation.  There is however still a need to include the public especially at the beginning and the end of research.

ISSUES and CONCERNS - Iain Chalmers and Paul Glasziou have provided us with a number of areas in which there is waste in research but what is the NIHR response? How do people find out about and get information about studies they can take part in? Who is doing something about co-morbities and the effects of multiple treatments for different conditions?

COORDINATION and COLLABORATION - How can we bring NIHR, NHS and the public together. How is it getting NIHR to work as ONE organisation? How will working together make a difference to the boundaries we are seeking to break? How can we avoid duplication and demonstrate value for money?

There are also people working in health and research who also struggle to make a difference and we need to find more issues where we could be working together. Alice Stewart, (no relation), is a great example.

I got started and enthused through a course called Building Research Partnerships which brings together the public and researchers to share ideas, find out a little bit more about each other and begin to plan some activities. The course was started in cancer by Macmillan Cancer Support and there are now very many others.

Remember, 'You don't have to be a person of influence to be influential. In fact the most influential people in my life are probably not aware of the things they have taught me.'  Scott Adams, creator of Dilbert

And finally, if you want to influence research then perhaps these questions might help

The last stop on the guided Curiosity Tour is GIVING! Tomorrow!

Wednesday, 15 October 2014


HELP! I need somebody. HELP!

Do you want to HELP improve research and are interested to know more?

You can help in many ways. You might like to start by listening to Tilly Hale's story about how she has been helping. Thanks to Philippa Yeales, who works at National Institute for Health Research Central Commissioning Facility, for passing this link around. 

You can start by seeing if you can HELP with some research that is beginning to take place. The James Lind Alliance (JLA) brings together people with different conditions together with researchers to find out if there are questions that haven't been asked.

It is always worth doing a search of the internet to see if you can discover ways in which researchers and patients are helping each other.

Here are 3 examples I like -

          for mental health,

                        for cystic fibrosis,

                                        and for cancer.

What happens to us and our loved once can offer information and insight. Sally Magnusson, in her powerful account of her mother's dementia says that it is not that her story is more important but that it could belong to anybody.

Healthtalkonline is an organisation that gathers stories about people's experiences of health and also has a number of examples of where people have helped to make a difference to research.

If you like some of these and would to know more about getting involved then have a look at Involve.

ACRONYM WARNING DANGER! As you enter this world it is worth saying that there are many different organisations that shorten their names to three letter acronyms. For example there are clerks who work in offices, Clarks Shoes, Clarke's in Government and then there are CLAHRCs. You may have to enter the strange world of Acronyms but help will be at hand in a future blog.

Find out more about a CLAHRC here for starters.

It may, now, be time for a cup of tea.

The next stop on my Curious Blog Tour is about INFLUENCING!

Please Note: I have deliberately separated 'helping' from 'influencing' as I believe them to be two parts of what is often referred to as 'public involvement'. I believe that that we have many people who want to just help and offer their account of what happened to them or their loved ones. It is for me a voluntary and altruistic action.