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.