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