Monday 21 August 2017

Being Effective #3 - Developing as a Patient Advocate

You can find more Top 10s: 
Why you are Involved here and The Purpose of Involvement here

These are just some of the characteristics that I have noticed in patient advocates who seem to be making a real difference. It was difficult to choose my Ten but do please let me know of others. 

@PeopleHealthWE suggests that these are about becoming Agents for Change. I agree!

1. Putting our story* aside. Our task is to help with a specific task rather than just recounting our experience (if the task is not clear - then make it so)

2. Asking when you don't know and asking again if it is not clear (a post-it note to person next to you works well) 

3. Helping to find solutions rather than listing the problems (making us part of the team)

4. Listening carefully to the discussion and think about where our experience could add value (this helps our contribution to be relevant and supportive)

5. Being an advocate for those who are not in the room and who sometimes can't have a say (by speak up we help give others a voice)

6. Helping researchers to get others involved rather than be the sole patient representative (helping the researchers learn rather than giving them an easy answer)

7. Bringing up the needs and value of caregivers, family and friends (helping turn bystanders into valuable resources)

8. Encouraging greater diversity and addressing health inequalities (needing to improve everyone's health and wellbeing)

9. Drawing upon wider life experiences to interpret and offer ideas and answers (providing a different perspective for a better understanding)

10. Thinking about how you might use the info you have learned e.g. Speaking at a support group, informing friends, etc. (learning is best when it is shared with others)

and another from @kareninns1 

10a. Reflecting on the difference you are making/have made to the research for the benefit of others (sharing impact with real world examples) 

* We will all tell our 'story'. It is often what brought us into the room. The events will touch people and it may bring tears to the eyes. Our story from diagnosis through treatment comes with a passion to help make things better - it is this drive that we need to use with effect. 

The telling of our story has a 'time' and a 'place'. The choice of certain moments makes us more effective and more likely to be listened to with respect. 

When we are working with researchers we do need to explain what brings us to the table. We need to listen to the discussion and be very selective in using the right moment from what happened to us to help make it real for others. 

This is what will lead to change.

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