TABLE 2.
Results of the co‐design process used to develop the patient and family engagement framework
| Motivation | Statements identified from the survey | 1st Round (Face validity) | 2nd Round (Face validity) | Statements identified during co‐design workshop to support final framework | Phase of Engagement |
|---|---|---|---|---|---|
| Self‐fulfilment | I am making a difference | Duplicate | Removed | Removed | N/A |
| A sense of purpose | Ambiguous | Renamed | This gives me a sense of purpose | Why I continue to be involved? | |
| I enjoy what I am doing | Kept | I enjoy what I am doing | Why I continue to be involved? | ||
| Helping others | Ambiguous | Renamed | I get to help others | Why I continue to be involved? | |
| I feel I am making a difference | Duplicate | Removed | Removed | N/A | |
| I see the difference I am making | Kept | I see the difference I am making | Why I continue to be involved? | ||
| I am supporting other patients | Kept | I am supporting other patients | What I need to strengthen my involvement? | ||
| I have established important relationships | Kept | I have established important relationships | What I need to strengthen my involvement? | ||
| I have improved patient experience | Kept | I have improved patient experience | What I need to strengthen my involvement? | ||
| Improving Health care | Improving the healthcare system | Duplicate | Removed | Removed | N/A |
| To make healthcare better | Duplicate | Removed | Removed | N/A | |
| I want to improve the health care system | Kept | I want to improve the health care system | Why I got involved? | ||
| To change the current culture of healthcare | Kept | To change the current culture of healthcare | Why I got involved? | ||
| Helping to improve healthcare | Ambiguous | Renamed | I am helping to improve healthcare | Why I continue to be involved? | |
| I want to improve healthcare for myself and my family | Duplicate | Removed | Removed | N/A | |
| To speak for those who can't speak for themselves | Ambiguous | Removed | Removed | N/A | |
| Compensation | I am getting paid | Duplicate | Removed | Removed | N/A |
| I get paid | Kept | I get paid | Why I continue to be involved? | ||
| Earning extra money | Duplicate | Removed | Removed | N/A | |
| It is an opportunity to make some extra money | Kept | It is an opportunity to make some extra money | Why I got involved? | ||
| I receive payment | Kept | I receive payment | What I need to strengthen my involvement? | ||
| I get to travel | Ambiguous | Kept | Removed | N/A | |
| Influence | I am challenging the ‘norm’ | Kept | I am challenging the ‘norm’ | Why I continue to be involved? | |
| I am impacting decisions | Kept | I am impacting decisions | Why I continue to be involved? | ||
| I am paving the way for others | Kept | I am paving the way for others | Why I continue to be involved? | ||
| Others listen to me | Kept | Others listen to me | Why I continue to be involved? | ||
| Communication between patients and health professionals have improved | Ambiguous | Removed | Removed | N/A | |
| Learning new things | I get to learn new things | Kept | I get to learn new things | Why I got involved? | |
| Learning new things | Duplicate | Removed | Removed | N/A | |
| I learn new things | Kept | I learn new things | Why I continue to be involved? | ||
| I continue to learn new things | Kept | I continue to learn new things | What I need to strengthen my involvement? | ||
| Perks | My expenses are paid | Kept | My expenses are paid | Why I continue to be involved? | |
| My expenses are paid | Duplicate | Removed | Removed | N/A | |
| I am able to travel | Kept | I am able to travel | What I need to strengthen my involvement? | ||
| Conditional | Your expenses are reimbursed | Ambiguous | Removed | Removed | N/A |
| You can work from home | Renamed | I can work from home | What I need to strengthen my involvement? | ||
| You attend an annual conference | Ambiguous | Removed | Removed | N/A | |
| The role could turn into a paid position | Ambiguous | Removed | Removed | N/A | |
| The commitment requires that you only attend four meetings per year | Renamed | My commitment is four meetings per year | What I need to strengthen my involvement? |