Being Effective Top Ten #4: Involving more than just me!

This is #4 in a series of posts to encourage learning and personal development for patient advocates who are effecting change in all aspects of health and social care research. You can read the previous post here.

All too often a patient is asked by a researcher to comment on different aspects of a study. We are pleased to be asked. We are happy to offer our opinion based on our experience. We are keen to know that our input made a difference.

But ‘involvement’ is not just about providing easy answers. It is about asking questions of the researcher.

1. Who with the condition have you spoken to about your research?

2. Have you looked into any related support groups, online communities or charities?

3. Are there particular problems for this condition with specific groups, communities or cultures?

GENTLE ADVICE: Go back to No1 and start again!

4. How relevant is your research to the issues the patients raised?

5. How have you altered your research since having those conversations?

6. What plans do you have to involve different patients/public in the planning and design stage of the study?

7. What ideas do you have for maintaining a relationship with those who have helped you in the delivery and dissemination stages?

8. Have you thought about ways of thanking the participants and those who helped?

9. How are you to tell those who took part about the results of the study?

10 How are you thinking about recording and reporting the impact of the patient/public involvement?

The questions, I have chosen, are aimed at offering to help researchers actually ‘get it’ - to make that total shift in their thinking and practice rather than possibly letting them off the hook. However, if you know the researcher well and they do get it, then giving advice is fine.

Involvement is as much about taking researchers on a journey. It is about taking research into communities. It is about a researcher feeling confident to talk with ordinary patients, carers and their families. It is about moving towards a more patient relevant culture. 

For many of us who are experienced patient advocates, we need to see ourselves as 'educationalists' - leading people to their own understanding; as 'knowledge brokers' with expertise who can help guide others, as 'skilled practitioners' in the different ways of involving people in a meaningful manner.

The thinking expressed here may be directly challenging to a number of people. It will question much of what is done yet I trust it will be seen as constructive challenge. I hope that it will help progress this movement which is as much about cultural change as it is about helping an individual researcher.