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 differently, watching 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!

HELP!

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.

TOUR at TO USE

Do you want to be able TO USE the available research to find out more about your health?

We are often prompted to find out when there has been some report in the media about some new breakthrough in medicine.

Here is an example from 

the Daily Mail OnLine 

Fortunately, there is a great website promoted by the NHS who provided a much clearer explanation of the facts. Unfortunately, too few people know about Behind the Headlines so let others know and add it to your favourite sites. 

But let's go back a few stages. It might be helpful to spend a little time thinking about WHY you want TO USE research.

Light at end of tunnel

Is it...

• to aid your discussions about your treatment options?
• to understand more about the latest research?
• to know more about your health and wellbeing?

and/or

• to help, influence and give to research? (These are the next 3 places on the tour so more in later posts) 

Each is slightly different but having a clear picture of what you want can be helpful.

LANGUAGE WARNING - The next few suggestions take you into Researchland but help is at hand with this online Research Jargon Buster. I use the term Researchland advisedly as it has its own language, culture and time difference.

If you really want to find out directly about the actual research you could start with Google Scholar or with PubMed. Just type in an illness, condition or enquiry and just pick one or two to start with.

These search engines will provide you with loads of papers but very few will have a lay summary of what the study is about or the result.


All of this illustrates one aspect of the 'time difference' in research land. Some areas, like cancer, are very good at providing you with information about the disease and the research alongside the people being treated and those who are trying to find the best treatments.

CHALLENGE WARNING - What can you do individually and collectively to make a difference so that similar, sensible and clear information is available. This is why creating A Research Active Nation is so vital.

But, if you are still not certain about existing research you might like to visit this site where 'uncertainties' are explored

Music Time: You might now want to relax and think about how timely this information is for you.

When I took some information, that I had found on the internet, into my consultation I was pleasantly surprised by the positive reaction but it turned out that my consultant had written some of the pages!

Too often I hear that the standard reaction is raised eyebrows, a few tuts and compete dismissal of any information that the patient has acquired. This is wrong and doctors need to change.

If research is to be of genuine value then we can help change the culture to one of greater shared decision making. Any enquiry we make shows a commitment, an interest, a willingness to find out and be a more engaged in the outcomes for our health and well-being. 

The Next POST is about How to HELP research

Do you want TO TAKE PART in a particular research study?

I

Taking part in research

Ask yourself a simple question!

Where might your next door neighbour begin to to find out about research studies that are relevant to them especially if you weren't around. 

 It is, after all, a NHS constitutional right.  

What about finding out from a hospital?

Imagine if all hospitals, clinics, surgeries and care homes had a leaflet about research. This lovely example from North Bristol NHS Trust now comes with QR barcode which can be scanned by many smart phones to take you straight to the site.

Barts Health NHS Trust in London make excellent use of their website to inform and help people to learn.

And HERE all the ways in which you can you can make a difference are explained.

CHALLENGE WARNING - Take a couple of minutes to look at your local NHS websites and see what is said about research. You might want to write to them and suggest some improvements and point them in the direction of good practice.

AND - check out your own Doctor's Surgery website. Does research get a mention?

Where are the signs?

The idea of having one place where you can go to find out about studies was a dream for many years. But how should we spread the word about this great resource.  

You can even download the App on your iPad here or FIND A STUDY.

CHALLENGE WARNING - Who have YOU told about these?

How easy will it be?

Ok, so now I know where I might find out about taking part in research. But what advice is there to help me?

Cancer is quite good at giving people the questions to ask but we need to get better at providing both general and specific information.

The Leicester Diabetes Centre has a great example for a very specific need.

People do want to take part. 

And a reference to things happening elsewhere in the United Kingdom at the moment you might like to glance at this VIDEO from across the border in Scotland.

Today's TUNE whilst you the tweet links to these posts and include @DerekCStewart

How do we encourage CURIOSITY about RESEARCH for the public?

How do we try to make sense of what we are doing? Can we begin to map and measure what we are trying to achieve by becoming a research active nation?

Research helps explore and answer questions about the best treatments, care and services. It also helps us understand how we might live healthier lives and prevent certain illnesses and conditions. BUT…  

How does the person in the street --- find out, take part, use, help, influence and give to research?

For example, how can someone…

‘Find out’ about NHS research in general and relevant studies

‘Takepart’ in any current NHS research

‘Use’ the findings from research to improve their health and wellbeing

‘Help’ inform and form research ideas, practice and governance

‘Influence’ the policies and legislation surrounding research to avoid waste

‘Give’ donations in samples, kind, time, effort and monies

We are getting better in some areas but too many many people look and leave confused, lost and bewildered banging their heads against a wall.


Our common task should be to help people in each of these areas so I have added a few of my thoughts to each area - but are they right???

So, from Monday 8th I shall begin a magical mystery tour of some places I have come across on the internet. 

I hope you will join me and I invite you add as many other places as possible in the coming weeks.

   

Come in, come in it’s nice to see you. How’s yersel’, yer looking grand

Andy Stewart, in the spirit of the Commonwealth Games, may be an unusual start to this blog but it oddly reflects how it felt being interviewed for Healthtalkonline's latest development about some of the things I have been doing as a former cancer patient in the world of research.


Like Andy Stewart, they were very welcoming. Unlike Andy, they certainly did not ask and then answer the question about my health and wellbeing. 

Healthtalkonline wants to listen to you!

Healthtalkonline gathers patients’ stories and experiences. It was started by two individuals who wanted to share their experiences of being patients as a means of helping others. We have all heard the 'patient story’ being told at any event. It can be a moving and powerful means of understanding the raw experience of treatment and the effects on the individual and their families. 

It is however difficult to find evidence to suggest that any evocative story on its own makes any real long term effect on subsequent care. The examples offered by Healthtalkonline means we can take the patient story and use it with our local communities, workplaces and patient groups.

Healthtalkonline has developed even further and is now looking at active patient involvement in research. 

Come in, come in its nice to see you… This should be the song for research. A welcoming voice, a cheery greeting to take part in research, to get actively involved, to donate time, effort, funds or even human tissue.

The idea of capturing the experiences of many of us who who taken those extra steps to help researchers improve their questions and research proposals, is excellent.  many of those interviews have also worked to change the policies and practices of research to making them more patient friendly and to shift the culture from doing to patients to one which is more of a shared endeavour.

To hear from people who have been involved for less than 5 years is particularly valuable and from some, like Maxine, who have been involved even longer than me

I particularly like the 'overview' which then subdivides the interviews to address particular issues about involvement. 

This resource will be helpful for people getting involved for the first time, it will help the development of active involvement in research and be of use to researchers for years in the future.

I quite like the idea of longevity. The notion that in the coming months, years and centuries we will have a historical record. Imagine if we could have heard from people of the past. Daniel Defoe’s book A Journal of the Plague Year was actually written over 70 years later so, although excellent, it is hardly a first hand account. What was it really like for the patients and their carers, for those who tried to find solutions, to mark the doors and carry off the bodies? 

Although a morbid thought, might we have sought better public health a full century before we did?

And, talking about things that are old you might want to hear my interview!