1. Involving users in data collection: findings of a systematic literature review Rosemary Chesson & Louise Mitchell Health Services Research Group INVOLVE Conference, Nottingham, November 2004

2. 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

3. User invol. in hlth & s/c research Requirement & right  political imperative  democratic right Positive outcomes for both:  participants  quality of research

4. 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

5. 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.

6. Methodology Based on NHS Centre for Reviews Electronic databases ASSIA 1987 – 2003MEDLINE 1966 - 2003 CINAHL 1982 – 2003PSYCINFO 1966 - 2003 IBSS 1987 – 2003COCHRANE 1993-2004 In addition: websites, own library, citations in materials accessed.

7. Focus of presentation Data collection stage Four electronic databases: ASSIA, CINAHL, IBSS, MEDLINE Users (excludes carers)

8. 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 people patient lay public subject

9. 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).

10. Difficulties to be addressed (2) Misleading titles! Glasby & Littlechild: Inappropriate hospital admissions: patient participation in research. Ross et al: Barriers to participation in randomised controlled trials: a systematic review.

11. Search strategy & outcomes

12. Main findings n = 81 43 opinion papers/guidelines 28 research-based studies 10 other

13. Research-based studies: n=28  surveys of prevalence;  feasibility of user involvement;  service development/evaluation;  evaluation of training users.

14. Research-based studies 28 papers 4 surveys of UI in research 8 other 16 research based papers

15. Stage of involvement STUDYPLAN/PROJ.DEVSTEERING/ADV GROUP DATA COLLECTION REPORTING/ DISSEMINATION OTHER A B C D E F G H I J K L M N O n=15

16. Data collection studies  Diversity  One study involved older people  No study involved children  Small number of users involved  Sketchy details  Few user-led

17. Methods of data collection Most likely Questionnaire design & distribution Interviewing Unlikely To evaluate impact of user involvement on research

18. User-researcher training 6 referred to training - 1 entire study on training - 3 made recommendations - 2 provided details

19. Support & supervision Several authors noted users ‘may require more support and supervision’ but few described it. Exception: Stalker (1998) User researcher supported by group worker at a local resource and activity centre for people with learning disabilities and local univ. researcher.

20. Needs of researchers Several authors acknowledged needs of researchers BUT none identified any strategies

21. ‘Use of... (participatory research) implies more than just a certain perspective or philosophy. Those who employ it must be prepared to operate in some non-traditional ways.... and overall work in ways they may not have learned about in the research class’ Alvarez & Gutierrez, 2001:12

22. 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

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