Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project

Birch, Rebecca; Simons, Gwenda; Wähämaa, Heidi; McGrath, Catherine M.; Johansson, Eva C.; Skingle, Diana; Bayliss, Kerin; Starling, Bella; Gerlag, Danielle M.; Buckley, Christopher D.; Stack, Rebecca J.; Raza, Karim; Falahee, Marie

doi:10.1186/s40900-020-0178-7

Table 4 Quantitative results of the survey for patient research partners (PRPs; N = 6)

From: Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project

Q1. What kind of impact has PRP involvement had on EuroTEAM overall?
	Extremely negative impact	Negative impact	Slightly negative impact	No impact	Slightly positive impact	Positive impact	Extremely positive impact
Number (%) of PRPs	0	0	0	0	0	6 (100%)	0
Q2. How much do you feel you have been able to contribute positively to WPs 1–3? (WP1 genetics, WP2 blood, WP3 tissue)
	No contribution at all	Minor contribution	Moderate contribution	Large contribution	Extremely large contribution
Number (%) of PRPs	0	3 (50%)	2 (33%)	1 (17%)	0
Q3. How much do you feel you have been able to contribute positively to WP4 (dissemination & user integration)?
	No contribution at all	Minor contribution	Moderate contribution	Large contribution	Extremely large contribution
Number (%) of PRPs	0	0	3 (50%)	3 (50%)	0
Q4. How well did you feel you understood the objectives, methods and outcomes of EuroTEAM?
	Did not understand at all	Understood a little	Moderate understanding	Understood a lot	Understood everything
Number (%) of PRPs	0	0	5 (83%)	1 (17%)	0
Q5. How did you feel about the number of assignments for PRPs in EuroTEAM?
	Far too few assignments	Too few assignments	About the right number of assignments	Too many assignments	Far too many assignments
Number (%) of PRPs	0	3 (50%)	3 (50%)	0	0
Q6. How did you feel about the level of difficulty of the assignments for PRPs in EuroTEAM?
	Far too difficult	Too difficult	About the right level of difficulty	Too easy	Far too easy
Number (%) of PRPs	0	0	6 (100%)	0	0
Q7. How did you feel about the amount of information you received about assignments for PRPs in EuroTEAM?
	Far too little information	Too little information	About the right amount of information	Too much information	Far too much information
Number (%) of PRPs	0	0	6 (100%)	0	0
Q8. How useful did you find the glossary for PRPs?
	Not at all useful	Not very useful	Moderately useful	Very useful	Extremely useful
Number (%) of PRPs	0	0	0	5 (83%)	1 (17%)
Q9. How welcome did you feel your opinions were?
	Not at all welcome	Not very welcome	Moderately welcome	Very welcome	Extremely welcome
Number (%) of PRPs	0	0	0	4 (67%)	2 (33%)
Q10. How well was PRP involvement co-ordinated?
	Not at all well- coordinated	Not very well- coordinated	Moderately well-coordinated	Very well- coordinated	Extremely well-coordinated
Number (%) of PRPs	0	0	0	1 (17%)	5 (83%)
Q11. How did you feel about the amount of feedback you received on the outcome of your contribution to assignments for PRPs?
	Far too little feedback	Too little feedback	About the right amount of feedback	Too much feedback	Far too much feedback
Number (%) of PRPs	1 (17%)	2 (33%)	3 (50%)	0	0
Q12. How did you feel about how fairly your contributions to the EuroTEAM project have been acknowledged?
	Not at all fairly	Not very fairly	Moderately fairly	Very fairly	Extremely fairly
Number (%) of PRPs	0	0	0	3 (50%)	3 (50%)
Q13. How well did you feel your contribution to EuroTEAM meetings was supported?
	Not at all well supported	Not very well supported	Moderately well supported	Very well supported	Extremely well supported
Number (%) of PRPs	0	0	1 (17%)	2 (33%)	3 (50%)
Q14. How interested are you in contributing to future research projects as a PRP?
	Not at all interested	Not very interested	Moderately interested	Very interested	Extremely interested
Number (%) of PRPs	0	0	0	2 (33%)	4 (67%)

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ISSN: 2056-7529

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