Investigating service user ethical priorities in psychological research

1. Investigating service user ethical priorities in psychological research Rachael Carrick

2. What makes service users feel they have been treated properly when researchers are looking at how people tick? L-T Merwood

3. RECs are responsible for acting primarily in the interest of potential research participants and concerned communities Central Office for Research Ethics Committees, 2001, p. 6

4. Official committees decide whether or not particular research projects can go ahead. The most important thing they must take into account is the good of people who take part and the good of people the research could affect.

5. Service User Ethical priorities Psychological Research Service User Being treated properly Finding out how people tick Explaining termsWhat words mean

6. Images from COREC

7. What has been done before

8. Methodology • Consultation • Nominal Group / Expert focus group … • Online (or post) Delphi questionnaire, 17 items, rated 1-7 importance + comments • Round two Delphi • average (median) • agreement levels (high, medium, low)

9. How it worked • Starter group • First questionnaire • Second questionnaire

10. Participants • Consultation • 3 service users knowledgeable about research • Nominal Group / Expert focus group • 6 service users, mixed but most mental health • Delphi • 92 service users, 71% female, 81% mental health • 58 service users, 72% female, 84% mental health

11. Results • 17 statements • 9 reached consensus criteria • 4 didn’t quite • 4 had substantial disagreement • Example statements from each area • Comments • Median and agreement levels

12. Results • People mostly agreed about half the things on the questionnaire. They thought they were all very important. • On other things people had more different ideas about what was important. • The most interesting things were • Things people disagreed about the most • The reasons people gave for their views

13. People agreed that: • Service users should help decide whether research projects are reasonable, respectful and fair • Researchers should be up front with people about what they are doing • Research should be well planned so all kinds of people can take part if they want • If research upsets or unsettles people they should be helped to get over it

14. People disagreed about: • Being paid! • Whether researchers can ask upsetting questions • How involved services users should be in choosing what research is done

15. Where there was agreement • Of the 9 statements reaching consensus all rated Very Important • e.g RECs should have people on them to represent service user views • Median 7; Range 5-7; IQR 0.00 • Themes • SUs provide a different and much needed perspective • If RECs are making decisions regarding SUs, SUs should be on them

16. Where there was some disagreement • Those statement that did not reach consensus (4) • There should be a good chance that research can make a positive difference to people’s lives • Median 6.5; Range 1-7; IQR 2.0 • see quote...

17. Example comment: • Although I think a major aim of research should be to identify knowledge that benefits people’s lives, to suggest all research should do this would be to deny some research might not show that e.g. some therapies don’t work but more importantly ‘box in’ researchers to do only what appears useful and prevent researchers proving/disproving care that might not yet be obvious but will be in the future. Researchers should be creative as well as practical. Katie

18. Where there was more disagreement • 4 Statements including: • Research should avoid asking questions that could upset participants • Median 3.0; Range 1-7; IQR 3.0 • See quotes

19. Example comments: An upsetting question that is asked may cause discomfort for five minutes, an upsetting question that is not asked may cause discomfort for a lifetime - how can we be educated about what upsets people if we don’t ask and consult them? Lucy People have the right to choose to do something that could be upsetting Emily

20. Broad themes across the items • Choice • Balancing empowerment and protection • The similarities and differences between research and therapy • The importance of relationship • Participants’ motivations • Service User understandings of the concept of science • Tension between objectivity and relevance

21. Example comment: • There seemed from my own experience to be a conflict between the scientific requirements of the trial, i.e. that all treatment plans in the trial should be comparable, and the importance of a treatment plan being tailor-made for an individual, e.g. I needed to talk at some length about the history of my condition in order to be able to build up trust with my practitioner. This was not possible within the constraints of the trial and was one reason why I decided to stop treatment within the trial and continue it outside. • Chloe

22. Representativeness of the sample Timing of the research – openness to SU input Dissemination Asking the right people Being realistic about what you can get done Letting people know what you found out Implications What next?

23. Why Delphi? • What is Delphi? • Flexible • Consensus methodology appropriate in the area of ethics • Allows collection of quantitative and qualitative information • Allows the views of a large group to be analysed without losing opportunity for individual comment