Involving users in data collection: findings of a systematic literature review

Rosemary Chesson & Louise MitchellHealth Services Research Group

INVOLVE Conference, Nottingham, November 2004

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

User invol. in hlth & s/c research

Requirement & right political imperative democratic right

Positive outcomes for both: participants quality of research

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

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.

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.

Focus of presentation

• Data collection stage

• Four electronic databases: ASSIA, CINAHL, IBSS, MEDLINE

• Users (excludes carers)

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

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).

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.

Search strategy & outcomes

Main findings

n = 81

• 43 opinion papers/guidelines

• 28 research-based studies

• 10 other

Research-based studies:

n=28

surveys of prevalence; feasibility of user involvement; service development/evaluation; evaluation of training users.

Research-based studies

28 papers

4 surveys of UI in research

8 other16 research

based papers

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

Data collection studies

Diversity One study involved older people No study involved children Small number of users involved Sketchy details Few user-led

Methods of data collection

Most likely

• Questionnaire design & distribution

• Interviewing

Unlikely

• To evaluate impact of user involvement on research

User-researcher training

6 referred to training

- 1 entire study on training

- 3 made recommendations

- 2 provided details

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.

Needs of researchers

Several authors acknowledged needs ofresearchers

BUT

none identified any strategies

‘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

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

Acknowledgements

We wish to acknowledge funding from Grampian University Hospitals NHS Trust Endowments