what is public involvement in research all about? sarah buckland director involve...
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What is public involvement in research What is public involvement in research all about?all about?
Sarah [email protected]
SURF Workshop February 2008SURF Workshop February 2008
What do we mean by research?What do we mean by research?
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•Research is a way of gaining new knowledge
•There are many different types of research
•We all use research skills in our daily lives
•Research helps to improve treatments and services
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Who do we mean by the “public”?
• Patients and potential patients
• Informal carers, parents and guardians
• People who use health and social care services
• Disabled people
• Organisations and communities representing the interests of people who use health and social care services
• Potential recipients of health promotion and public health programmes
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What do we mean by “involvement”?
Active participation in research
Not as participants in Research
Consultation, collaboration or user controlled
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How are people getting involved?
- becoming members of advisory groupse.g. advising on what research
should be fundedadvising on research projects
- commenting on or contributing to written documents
e.g. peer reviewing research applications
commenting on information sheets
- collecting information or datae.g. interviewing
- analysing research findings
- writing up and sharing the findings of research
- managing research projects
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Some examples ….Some examples ….
Research for Patient Benefit Research for Patient Benefit ProgrammeProgramme
• Two members of the public sit on each of the 10 regional panels assessing research applications
• Peer review research applications
• Influencing which projects are fundedINVOLVEINVOLVE
Some examples ….Some examples ….
PRISM Trial (Langston et al, 2005)PRISM Trial (Langston et al, 2005)
• Advised on design and undertaking of research
• Improved patient leaflets
• Assisted in recruitment of participants
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Some examples ….Some examples ….
Arthritis and Rheumatism research (Hewlett et al, August 2006)
• Raised issues of importance to patients
• Advised on reasons for low recruitment
• Researchers gained greater understanding of rheumatoid arthritis and its impact
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Some examples ….Some examples ….
Breast cancer trial – (Marsden and Bradburn, 2004)
• Contributed to priorities for final trial design
• Highlighted lack of information about breast cancer and Hormone Replacement Therapy in general
• Improved quality of consent processINVOLVEINVOLVE
So why get involvedSo why get involved?
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You can help:
• identify what research is important to you and others like you
• influence the way research is planned and carried out
• improve the experience for people taking part in research
• let people know about the findings of research
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Some things to considerSome things to consider
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•Role descriptions / expectations
•Level of commitment required
•Commitment by researchers
•Support and training available
•Payment and reimbursement for expenses
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National advisory group. Funded by the Department of Health, since 1996.
Aim to promote and support active involvement of the public in health and social care research.
How can we help?How can we help?
•Website www.invo.org.uk
•Newsletter
• Publications
•Mailing list
• Contact us:• Tel: 02380 651088• Email: [email protected]
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