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Involving users in data collection: findings of a systematic literature review
Rosemary Chesson & Louise MitchellHealth Services Research Group
INVOLVE Conference, Nottingham, November 2004
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Terminology
User, consumer, survivor, refuser ...
‘Please, please stop using the term “user” on its
own. It should always be prefaced by service.
The term has connotations of using someone,
ie taking advantage, and drug users are often
called users in a derogatory way.’
Respondent, UCSR event
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User invol. in hlth & s/c research
Requirement & right political imperative democratic right
Positive outcomes for both: participants quality of research
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Starting point
Underlying question:
What literature was available that might be
accessed by researchers new to user involvement
Alert to:
Limitations of systematic review methodology
Relationship with Evidence Based Practice
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Project aims
Main aims were to:
• undertake a SR of the lit reporting user involvement in at least one stage of the research process;
• identify the main methods of involving users in research;
• develop guidelines for involving users in research.
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Methodology
Based on NHS Centre for Reviews
Electronic databases
ASSIA 1987 – 2003 MEDLINE 1966 - 2003
CINAHL 1982 – 2003 PSYCINFO 1966 - 2003
IBSS 1987 – 2003 COCHRANE 1993-2004
In addition: websites, own library, citations in materials accessed.
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Focus of presentation
• Data collection stage
• Four electronic databases: ASSIA, CINAHL, IBSS, MEDLINE
• Users (excludes carers)
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Search terms
20 search terms used
• entered as combinations of key words or title words or key words of a database entry;
• truncated to find related word or same stem eg
Involv* + research + user client peoplepatient laypublic subject
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Difficulties to be addressed (1)
Defs, lit & design
• definition of ‘research’;• definition of user and involvement;• nature of literature includ. grey;• adequate information regarding design and
methods used (participatory research).
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Difficulties to be addressed (2)
Misleading titles!
Glasby & Littlechild: Inappropriatehospital admissions: patient participationin research.
Ross et al: Barriers to participation inrandomised controlled trials: a systematicreview.
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Search strategy & outcomes
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Main findings
n = 81
• 43 opinion papers/guidelines
• 28 research-based studies
• 10 other
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Research-based studies:
n=28
surveys of prevalence; feasibility of user involvement; service development/evaluation; evaluation of training users.
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Research-based studies
28 papers
4 surveys of UI in research
8 other16 research
based papers
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Stage of involvement
STUDY PLAN/PROJ.DEV STEERING/ADV GROUP
DATA COLLECTION
REPORTING/ DISSEMINATION
OTHER
A
B
C
D
E
F
G
H
I
J
K
L
M
N
O
n=15
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Data collection studies
Diversity One study involved older people No study involved children Small number of users involved Sketchy details Few user-led
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Methods of data collection
Most likely
• Questionnaire design & distribution
• Interviewing
Unlikely
• To evaluate impact of user involvement on research
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User-researcher training
6 referred to training
- 1 entire study on training
- 3 made recommendations
- 2 provided details
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Support & supervision
Several authors noted users ‘may require more supportand supervision’ but few described it.
Exception: Stalker (1998)
User researcher supported by group worker ata local resource and activity centre for peoplewith learning disabilities and local univ. researcher.
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Needs of researchers
Several authors acknowledged needs ofresearchers
BUT
none identified any strategies
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‘Use of ... (participatory research) implies more than just a certain perspective or philosophy.Those who employ it must be prepared tooperate in some non-traditional ways .... andoverall work in ways they may not have learnedabout in the research class’
Alvarez & Gutierrez, 2001:12
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Conclusions
• Review difficult to undertake• Not likely to be fully comprehensive• Indicates few published accounts of users
involved in data collection• Traditional research methods employed• No body of evidence to indicate user
involvement results in better research
Overall gap between rhetoric and reality
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Acknowledgements
We wish to acknowledge funding from Grampian University Hospitals NHS Trust Endowments