Being Effective #5 Influencing Research and making friends

Being Effective #5 - Influencing Research (and Making Friends)

Produced by John Reeve and Derek Stewart with further rich contributions from Roger Wilson, Jacqui Gath, Kathy Oliver, John Lancaster, Victoria Nnatuanya - members of the NCRI Consumer Forum - Thank you!

Our main function is often to inform the researcher but we also have a responsibility to influence research now and for the future. This may be about the type of research that is carried out, the range of research, the use of technology, etc.

So, how have many of these cancer patients made their voices heard so powerfully in research policy and practice. Here is the latest Top Ten:  

1. Get to know people - we are human beings first rather than either patient & researchers. It is a relationship.

2. Ask about each other’s life’s away from health and research* 

3. Have a genuine interest in the research that is being done

4. Enquire about the challenges and issues faced in this research

5. Seek out one or two ‘quick wins’ that together could be achieved

6. Focus on where the patient input could add most value 

7. Once accomplished, or when nearly there, begin the bigger task

8. Identify and define the actual problem (e.g. is it to do with practice, systems or policy)

9. Make a plan that you can explain and people understand 

10 Finally, Just Do it! 

And a DON'T: If you’re trying to influence an individual or a room full of people and what you’re doing isn’t working, STOP. Try something different. Repeating our message or saying it louder invariably makes things worse.

* This provoked an email dialogue which touched on examples including the merits of the Playstation, black pudding, musical inabilities, travel, children, holidays and fund raising concerts. (These are clearly the meetings I should have attended)

John Reeve added the following contribution to our email chatter which I thought was worth adding here. It is that valuable reminder that we as patients bring a host of other experiences and knowledge to the table.

Many years ago I came across the Trust Equation - the core of relationships

T=( C+R+I)/SO

Where T= Trust: C=  credibility - a first impressions judgement we make of each other all the time; R= reliability - takes time to build. You can have a solid working relationship based on mutual C+R. The thing that takes a solid relationship and transforms it into a strong, influential and enduring one is I= Intimacy. An interest and investment in each other as people - a shared interest or hobby that builds a strong connection.

It reminds me also of the denominator in the equation - SO - which can destroy all this good work. Self Orientation - playing games or having another agenda destroys trust.

We should never underestimate as patient advocates, the influence we hold based on our open, transparent and passionate support of patients and the patient voice. Often we bring this to bear at a critical moment when other agendas may be swaying an important decision and help find consensus and shared accountability.