Consultants attitudes to consumer involvement in clinical research Rachel Thompson, Alan Horwich,...
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Consultants attitudes Consultants attitudes to consumer to consumer involvement in involvement in clinical research clinical research Rachel Thompson, Alan Horwich, Jim Laxton, Joe Flaherty, Andy Norman, Barbara Pearce, John Baart
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Consultants attitudes to Consultants attitudes to consumer involvement in consumer involvement in
clinical researchclinical research
Rachel Thompson, Alan Horwich, Jim Laxton, Joe Flaherty, Andy Norman,
Barbara Pearce, John Baart
IntroductionIntroduction
Consumer Research Advisory Group CRAG4(7) consumers1 Secretary1 Clinical lead
Group RemitWork with researcher to ensure research is important to both HCPs and ConsumersProduce consumer friendly protocols
Don’t know how many researchers are pro consumer involvement and how many currently work with
consumers
AimsAims
To identify possible roles for members of the Consumer Research Advisory Group (CRAG)
To give group members the opportunity to gain an greater understanding of research through experience
To identify what training if any was needed
To identify any barriers to consumer involvement, those consultants experienced in working with consumers and the motivators
MaterialsMaterials
A questionnaire was designed consisting of Y/N questions, open questions with free text response, and statements for comment on level of agreement or disagreement
INVOLVE’S definitions of Consultation, Collaboration and User Controlled were given at the beginning of the questionnaire
Name and contact details requested for those consultants wishing to work with the group members
1. Are you aware that there are government initiatives to promote user involvement in clinical research?
YES/NOYES/NO
2. Have you ever been involved in clinical research that has consulted users for their views on the overall project design or patient information sheet?
YES/NOYES/NO
3. Have you been involved in clinical research that has collaborated with users in the entire research process eg design, monitoring, analysis and dissemination?
YES/NOYES/NO
Questionnaire: Y/N ExamplesQuestionnaire: Y/N Examples
• What role, if any, do you think there is for users within the clinical research process?
• What specific training do you think the members would require?
• Please make any other comments you wish about the issues and challenges of user involvement in clinical research
Questionnaire: Free Text ExamplesQuestionnaire: Free Text Examples
1. Collaboration results in a more user friendly research project thus aiding patient recruitment
2. Collaboration is time consuming with minimal benefits
3. Collaboration will result in loss of control over the research project due to the active involvement of users
Strongly Strongly agreeagree
AgreeAgree DisagreeDisagree Strongly Strongly disagreedisagree
Don’t knowDon’t know
xx
Questionnaire: Statement ExamplesQuestionnaire: Statement Examples
MethodMethod
Postal questionnaire was sent to 250 Consultants working in an oncology setting within the South West London Cancer Research Network.
A reminder letter was sent after 2 weeks.
The data was entered into an Access Database specifically designed for the study and then exported into Excel Spreadsheets for analysis
Consultants were stratified according to their speciality, sub-speciality, place of work and previous research role
SOUTH WEST LONDON
CANCER RESEARCH NETWORK
Consumer Research Advisory Group
“CRAG”
Survey of Consultants’ Views
On User Involvement
in Clinical Research
250 questionnaires 93 responses
157 non respondents
1 Unaware of Government initiatives or CRAG
2. Little or no interest in consumer involvement
3. Hostility to consumer involvement
4. To busy to fill in non essential forms
Principal investigators.
V
Other consultants.
Consultants who were aware of government initiatives
0
10
20
30
40
50
60
70
Yes No
Nu
mb
er o
f re
spo
nd
ents
66%34%
Consultants who had consulted with users
0
10
20
30
40
50
60
70
80
Yes No
Nu
mb
er
of
res
pn
de
nts
28%
72%
Consultants who had collaborated with users
0
10
20
30
40
50
60
70
80
90
Yes No
Nu
mb
er o
f re
spo
nd
ents
91%9%
“What role if any
do you think there is for users
within the clinical research process”
Consultation RoleAreas for Consultation Number %
Patient Information 23 47%
Practicability Assessment 13 27%
Ethics 11 22%
Quality of Life Issues 7 14%
Patient Support Services 3 6%
Legislation/Compliance 1 2%
Total no of consultants commenting on consultation 49
Consultation RoleAreas for Consultation Number %
Patient Information 23 47%
Practicability Assessment 13 27%
Ethics 11 22%
Quality of Life Issues 7 14%
Patient Support Services 3 6%
Legislation/Compliance 1 2%
Total no of consultants commenting on consultation 49
Collaboration RoleAreas for Collaboration Number % of
consultants
Study Design 24 56%
Feedback/Review 12 28%
Dissemination 7 16%
Viable Research Question 6 14%
Promotion 4 9%
Improving Communications 1 2%
Total no of consultants commenting on consultation
43
CollaborationAreas for Collaboration Number % of
consultants
Study Design 24 56%
Feedback/Review 12 28%
Dissemination 7 16%
Viable Research Question 6 14%
Promotion 4 9%
Improving Communications 1 2%
Total no of consultants commenting on consultation
43
Collaboration
Study Design 56%
Feedback/Review 28%
“To ensure that protocols are acceptable to patients
and that questionnaires are clear”
User Controlled Research
10 responses
User Controlled Research
10 responses
“Decision making” “Research questions”
“What specific training
do you think
the members would require”
56 responses
•Research Methodology •Experience and/or knowledge of cancer
•No training
“…. knowledge of statistics”
“For clinical trials they would need training in basic statistical theory and the practice of
trials”
Research Methodology
Experience and/or knowledge of
cancer
8 respondentsConsidered essential by
No training
2 respondents
No training
•“None, they will only be consulted in their role as patients and not as experts”
•“No specific training since this may bias the actual benefit of asking potential patients for their
opinion”.
“ Any other comments you wish to make about
The issues and challenges of user involvement in clinical research”
29 (31%) of the 93 respondents
Positive
Negative
Miscellaneous.
Positive
Negative 75%
Miscellaneous.
• User selection
• Time commitment
• Cost
• Consumers’ lack of understanding
Positive
Negative 75%
Miscellaneous.
• User selection
• Time commitment
• Cost
• Consumers’ lack of understanding
“Users will have to be carefully selected to check their reasons for wishing to
become involved”
“The usual difficulty is finding representatives with
enough time and skills to contribute while not having narrow preconceptions due
to personal experience”
Positive 20%
Negative
Miscellaneous.
• patient information
• research design
Positive 20%
Negative
Miscellaneous.
• patient information
• research design
“use of simple English for the patient consent
documents”
“consultation with users is very …informative”
Positive 20%
Negative
Miscellaneous.
Positive 20%
Negative
Miscellaneous.
“Needs to be simple and non bureaucratic”
“This must not be done simply because it is seen to
be politically correct”
“User input has not been assessed – this is a project
in itself”
The following statements are designed to assess your views on user involvement in clinical research. Please could you circle the most appropriate response?
1. The consultation of users in the clinical research process enables researchers to obtain user views without having to commit to acting on them.
2. Consultation is the most effective and efficient means of involving
users in the clinical research process.
3. Consultation does not allow the user to make a definite contribution to the clinical research decision making process.
4. Consumer involvement will help to achieve the objectives of the research project.
5. Consumer involvement will improve the quality of the research project.
6. Collaboration results in a more user friendly research project thus aiding patient
recruitment.
7. Collaboration is time consuming with minimal benefits.
8. Collaboration will result in loss of control over the research project due to the active involvement of users.
9. Users can help to interpret and understand research data once analysed.
10. Involving users in the clinical research process means that questions are addressed
which are considered important by both researcher and user.
11. User involvement will increase the cost of the research project.
12. User involvement will increase the timescale of the research project.
13. User involvement will increase the “value for money” of research projects
14. User involvement is of no benefit to clinical research
15. User involvement will help to target or prioritise research projects
16. User involvement will help to obtain funding for a research project
Strongly Agree
Agree Disagree Strongly Disagree
Don’t Know
Statements testing a positive response to user involvement
0
10
20
30
40
50
60
70
strongly agree agree disagree stronglydisagree
don't know
Num
ber o
f res
pode
nts 62%62% 21%21% 17%17%
Statements testing a negative response to user involvement
0
10
20
30
40
50
60
70
stronglyagree
agree disagree stronglydisagree
don't know
Nu
mb
er
of
resp
on
den
ts
73%15% 12%
1 The consultation of users in the clinical research process enables researchers to obtain user views without having to commit to acting on them
0
10
20
30
40
50
60
strongly agree agree disagree stronglydisagree
don't know
0
10
20
30
40
50
60
strongly agree agree disagree stronglydisagree
don't know
No.
of R
espo
ndan
ts
Qu. 2. Consultation is the most effective and efficient means of involving users in the clinical research process
6 Collaboration results in a more user friendly research project thus aiding patient recruitment
0
10
20
30
40
50
60
strongly agree agree disagree stronglydisagree
don't know
Qu. 8.Collaboration will result in loss of control over the research project due to the active
involvement of users
0
10
20
30
40
50
60
strongly agree agree disagree stronglydisagree
don't know
0
10
20
30
40
50
60
strongly agree agree disagree stronglydisagree
don't know
Qu. 16. User involvement will help to obtain funding for a research project
0
5
10
15
20
25
30
35
40
45
strongly agree agree disagree strongly disagree don't know
No
. o
f re
spo
nd
ents
4. User involvement will help to achieve the objectives ofthe research project
5. Consumer involvement will improve the quality of theresearch project
0
10
20
30
40
50
60
stronglyagree
agree disagree stronglydisagree
don't know
User involvement will help to target or prioritise research projects
0
10
20
30
40
50
60
strongly agree agree disagree stronglydisagree
don't know
Users can help to interpret and understand research data once analysed
Statements adressing concerns over costs and time
0
10
20
30
40
50
60
strongly agree agree disagree stronglydisagree
don't know
Nu
mb
er
of
resp
on
den
ts
