Being Effective Top Ten #1: Starting with Ourselves

These were some of the points I made in my talk to Katie'sTeam @kt_network

My Top Ten hints for effective #publicinvolvement #inresearch

1. Our experience and insights are the balance to the researcher's knowledge 

2. Our understanding is of equal value to the researcher's experience 

3. Be confident and assured even when we don't feel it inside

4. Believe in our right to be involved and that it is right that we are part of the dialogue 

5. Remember that much of research is publicly funded by donation, taxation, legacy or activities designed to raise cash - it is our research

6. Check out what is required and expected of us and be clear about our requirements and expectations in return

7. Speak up and out about the issues that are important and inquire whether it is the appropriate place to raise them

8. Always ask what is going to done about issues we raise, who will do it, when will it be done and how will we know it has been done

9. Write a 'diary' of reflections on what we are learning as we soon forget what we didn't know

10. Keep going even when we feel it is taking too long - it is actually changing for the better*

Q. What are your Top Ten hints? 

*Some of the improvements I have witnessed include....

• More people are given the opportunity to take part in research 
• Research is taking less time to get set up, recruit and meet the target number of participants 
• Research is happening in more clinics, GPs and in care homes
• Patient Information Sheets are much improved in terms of content, language and explanation
• More studies are adapting as results start to show
• Patient Experience surveys are showing how people like taking part
• Public involvement is more widespread and becoming a sharper instrument of change and improvement 

The experience, voice and presence of both patients and the public have been vital catalysts for change in achieving all of this. 

Is it sufficient? Is it happening quick enough? Quite frankly - NO but it is important that we recognise the progress that has been made and keep up the pressure.